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IT

EDRIC DysNet

What If?

COMUNICATO STAMPA

Oggi, lunedì 15 settembre, viene lanciata in più paesi una campagna per raccogliere fondi a favore di servizi di informazione e supporto rivolti a genitori di bambini nati con disabilità agli arti. 

La raccolta fondi è stata diretta da un'organizzazione ombrello composta da associazioni di persone affette da disabilità congenite agli arti chiamata EDRIC (European Dysmelia Reference Information Centre). 

In associazione con la piattaforma di crowdfunding Indiegogo, EDRIC sta raccogliendo fondi per creare risorse online in modo che i genitori di bambini con malformazioni agli arti (sia che lo sappiano prima o dopo la nascita) siano in grado di avere accesso a informazioni accurate e affidabili e quindi non si sentano più isolati. 

La campagna dal titolo " E se? Il tuo bimbo avesse una malformazione agli arti" sarà realizzata in 5 lingue diverse - inglese, francese, spagnolo, italiano e Tedesco - a si appoggierà ai social media e a contenuti video prodotti ad hoc per diffondere la notizia. 
Indiegogo

"Avere un bambino con una malformazione agli arti spesso è uno shock per I genitori, molti dei quail non sanno a chi rivolgersi per ricevere aiuto" riporta il presidente di EDRIC Geoff Adams-Spink. 

"In collaborazione con molte delle nostre associazioni membre, saremo in grado di creare fonti informative online."

In vista della campagna, EDRIC ha effettuato ricerche che dimostrano come la maggior parte dei genitori di bambini con malformazioni agli arti (conosciute come dismelie) non sanno a chi rivolgersi per chiedere aiuto.  Un questionario condotto dall'organizzazione mostra che - di quelli che hanno risposto - l'80% non erano a conoscenza di alcuna fonte di aiuto o consigli per supportarli nei primi anni di vita del bambino. 

Quattro rispondenti hanno riferito che gli è stata data meno di un'ora per decidere se desideravano inrterrompere la gravidanza dopo la diagnosi di malformazione agli arti.  Un'altra rispondente ha riportato che le era stata offerta l'interruzione di gravidanza al quinto mese - al suo bambino mancava solo una mano. 

"E' necessario capovolgere questa situazione" dice il sig.  Adams-Spink

"Le persone rimangono scioccate quando vedono il loro bambino la prima volta oppure quando effettuano l'ecografia e non sono sicuri se procedere o meno con la gravidanza.  E' molto importante in quel momento che i genitori o i futuri genitori siano consapevoli che le persone con malformazioni agli arti possono vivere vite felici e appaganti."

La campagna prende il via con un video ad alto impatto della durata di 90 secondi - "Persone normali - Vite straordinarie" - che mostra alcune persone con disabilità agli arti impegnate in attività sorprendenti. 

La campagna ha commissionato una serie di brevi video in cui persone con malformazioni agli arti sono invitate a rispondere alla domanda "Che differenza ho portato nel mondo?", EDRIC si augura che non solo le persone siano inspirate a condividere il video con le loro famiglie e i loro contatti ma anche che, nel caso sia appropriato, registrino essi stessi i loro contributi da utilizzare nella campagna. 

La campagna di EDRIC " E se?" si propone di raccogliere 30.000 Euro per finanziare risorse online. 


NOTE PER GLI EDITORI

  • Per maggiori niformazioni prego contattare il tesoriere di EDRIC Salvatore Giambruno via email a sal.giambruno@edric.eu o chiamare lo +39 348 8749160
  • La campagna utilizza la piattaforma Indiegogo per raccogliere fondi - maggiori niformazioni sono disponibili sul sito web di Indiegogo
  • Il video di lancio della campagna è visualizzabile qui
  • Lo European Dysmelia Reference Information Centre è un'organizzazione non governativa no profit registrata in Svezia (no.  802444-3015)
  • EDRIC ha 27 organizzazioni member in 19 paesi - la maggior parte di queste sono stati UE - e rappresentano 5000 persone che vivono con disabilità agli arti. 
  • EDRIC gestisce un network online sulle dismelie (DysNet) supportato da un sito web in più lingue aggiornato frequentemente e dall'attività sui social media Facebook, Twitter e YouTube, ed ha inoltre un forum multilingual online, RareConnect, per condividere informazioni e avere sostegno tra pari. 
  • Dismelia si riferisce a delle condizioni estremamente rare - maggiori informazioni sono disponibili su DysNet
  • DE

    EDRIC DysNet

    What If?

    PRESSEMITTEILUNG

    (Montag 15.  September) Heute wurde eine internationale Spenden-Kampagne für den Aufbau von Beratungs- und Unterstützungsdiensten für Eltern von Kindern mit Gliedmaßenschädigungen lanciert. 

    Die Spendenaktion wird von der Dachvereinigung von Organisationen für Menschen mit Gliedmaßen-Unterschieden EDRIC (Europäisches Dysmelie Referenz Informations Centrum) geführt. 

    In Partnerschaft mit der weltgrößten Internet Crowdfunding-Plattform Indiegogo sammelt EDRIC Mittel zum Aufbau von Online-Ressourcen.  Damit sollen Eltern von Kindern mit Gliedmaßen-Unterschieden Zugang zu zuverlässigen Informationen erhalten und sich nicht mehr isoliert fühlen. 

    Die Kampagne "Was wenn? Ihr Baby Gliedmaßen-Unterschiede hat" (What If? - Your Baby Has a Limb Difference) wird in fünf Weltsprachen geführt - Englisch, Französisch, Spanisch, Italienisch und Deutsch. 
    Indiegogo

    "Ein Kind mit einem Gliedmaßen-Unterschieden trifft Eltern oft wie einen Schock.  Viele wissen nicht wissen, wo sie Hilfe und Informationen erhalten könen", sagte EDRICs Vorsitzender

    Geoff Adams-Spink.  "In Zusammenarbeit mit unserer Mitgliedsorganisationen werden wir die Einrichtung von Online-Informationsquellen aufbauen."

    In Vorbereitung auf die Kampagne hat EDRIC Forschung betrieben, die zeigt dass die Mehrheit der Eltern von Kindern mit angeborenen Gliedmaßen-Unterschieden (auch als Dysmelie bekannt) nicht wissen, wo sie Unterstützung erhalten können.  Eine laufende Umfrage der Organisation zeigt, dass 80% der bisher eingegangenen Antworten keine Hilfs-Quellen oder Beratung, für Unterstützung in den ersten Lebensjahren ihres Kindes bekannt war. 

    Ein Extrembeispiel: Vier Personen berichteten, dass sie mit einer Bedenkzeit von unter einer Stunde vor die Wahl eines Schwangerschaftsabbruchs gestellt wurden.  Eine weitere Befragte sagte aus, dass ihr noch im fünften Schwangerschaftsmonat eine Abtreibung angeboten wurde.  Dem heranreifenden Kind fehlte nur eine Hand. 

    "Wir müssen diese Situation umkehren", sagte Adams-Spink.  "Die Menschen sind entweder bei der Geburt schockiert, oder sie stehen nach einer Ultraschalluntersuchung vor der schwierigen Frage einer Abtreibung.  Uns ist es wichtig aufzuzeigen, dass wir Menschen mit Gliedmaßen-Unterschieden im Sinne anderer Befähigungen glückliche, erfolgreiche und ausgefüllte Lebensentwürfe verwirklichen können und dies auch häufig schaffen."

    Die Kampagne beginnt mit einem high-impact, 90sekündigen Video - "Normale Menschen, Außerordentliche Leben", welches eine Reihe von Menschen mit Behinderungen an Gliedmaßen bei ganz erstaunlichen Aktivitäten oder im Alltag zeigt. 

    Darüber hinaus haben wir bereits Dutzende Videos produziert, in denen Menschen mit Gliedmaßen-Unterschieden die Frage beantworten: "Was habe ich erreicht/wie habe ich die Welt bereichert" beantworten.  EDRIC hofft, dass Menschen nicht nur angeregt werden, diese Videos mit Freunden und Angehörigen zu teilen, sondern auch ihre eigenen Beiträge produzieren und einschicken. 

    Insgesamt zielt EDRICs "Was wenn?" Kampagne zielt darauf ab 30 000 Euro Spenden für die Finanzierung eines Online Informations- und Unterstützungsportals und die erforderlichen Inhalte und personellen Dienstleistungen einzusammeln. 

    / ENDE

    HINWEISE FÜR REDAKTEURE

  • Für weitere Informationen kontaktieren Sie bitte EDRIC Chief Operating Officer Tobias Arndt per E-Mail tobias.arndt@edric.eu oder telefonisch unter +32 483 736519
  • Die Fundraising-Kampagne wird über die Plattform Indiegogo geführt - weitere Informationen können auf der Website Indiegogo
  • Das Kampagne-Start Video kann hier gesehen werden
  • Die Europäische Dysmelie Referenzinformationszentrum ist eine Non-Profit-Organisation registriert Schweden (Nr.  802444-3015)
  • EDRIC hat 27 Mitgliedsorganisationen in 19 Ländern - die Mehrheit von ihnen EU-Mitgliedstaaten-representiert 5.000 Menschen mit Gliedmaßen-Unterschieden
  • EDRIC betreibt ein Online-Netzwerk für Dysmelie (DysNet), das häufig aktualisiert wird und mehrsprachig ist.  Im Bereich Soziale Medien sind wir auf Facebook, Twitter und YouTube aktiv und betreiben ein eigenes mehrsprachiges Online-Forum unter RareConnect, für Informationsaustausch und gegenseitige Unterstützung. 
  • Dysmelie beschreibt eine Reihe von äußerst seltenen Bedingungen - weitere Details dazu finden Sie auf DysNet
  • ES

    EDRIC DysNet

    What If?

    NOTA DE PRENSA

    Una campaña multi-nacional para recaudar fondos para dar servicios de apoyo y consejo para padres de niños nacidos con diferencia de extremidades se lanza hoy (Lunes 15 de Septiembre). 

    La recaudación está siendo dirigida por una organización paragua de organizaciones de afectados por diferencias congénitas de extremidades llamada EDRIC (Centro Europeo de Información de Referencia sobre la Dismelia). 

    En colaboración con la plataforma de micromecenazgo, Indiegogo, EDRIC está recaudando fondos para crear recursos en línea para que los padres que tienen hijos con diferencias en las extremidades (tanto si lo saben antes o después del nacimiento) sean capaces de acceder a información precisa y fiable y así evitar que se sientan aislados. 

    La campaña - "Su bebé tiene una diferencia de extremidades - ¿Y entonces?" - se llevará a cabo en 5 idiomas - Inglés, Francés, Español, Italiano y Alemán. 

    Indiegogo
    "Tener un hijo con diferencias en las extremidades suele ser un shock para los padres, muchos de los cuales no saben a quién recurrir en busca de ayuda," según declaraciones del Presidente de EDRIC, Geoff Adams-Spink. 

    En asociación con muchas de nuestras organizaciones miembros, vamos a crear fuentes de información online". 

    En la preparación de la campaña, EDRIC ha realizado investigaciones que demuestran que la mayoría de los padres de niños con malformaciones congénitas de las extremidades (conocidas como dismelia) no saben dónde acudir para recibir apoyo.  Una encuesta conducida por la organización demuestra que el 80% no estaba al tanto de ninguna fuente de ayuda o consejo para apoyarlos durante los primeros años de sus hijos. 

    Cuatro encuestados informaron que se les dio menos de una hora para decidir si interrumpir o no el embarazo después de un diagnóstico de malformación de extremidades.  Otro encuestado dice que le ofrecieron una terminación de su embarazo de cinco meses - su hijo le faltaba sólo una mano. 

    "Tenemos que cambiar esta situación", dijo Adams-Spink. 

    "La gente está bien sorprendida después de la ecografía y no están seguro si proceder o no con el embarazo.  Es importante, en este punto, que los padres o futuros padres sean conscientes que la gente con anormalidades en las extremidades viven una vida completa y feliz."

    La campaña arranca con un vídeo de 90 segundos de alto impacto - "Gente corriente - Vidas Extraordinarias" - que muestra un número de personas con diferencias en las extremidades haciendo cosas increíbles. 

    La campaña cuenta con una serie de videos cortos en los que las personas que viven con anormalidades en las extremidades se les pide que contesten la pregunta, '¿Qué diferencia he hecho para el mundo?'- EDRIC espera que la gente no sólo comparta estos vídeos con familiares y amigos, sino que cuando lo consideren conveniente, graben sus propias contribuciones para utilizarlas en la campaña. 

    La campaña de EDRIC - "¿Y si?" tiene como objetivo recaudar 30 000 Euro para financiar recursos online. 

    /ENDS

    NOTAS PARA LOS EDITORES

  • Para más información por favor contacte el Presidente de EDRIC, Geoff Adams-Spink a través de correo electrónico geoff.adams-spink@edric.eu o llame al +44 7711 898787
  • La campaña está utilizando la plataforma Indiegogo para recaudar fondos - más información en la página web de Indiegogo
  • El video de lanzamiento de la campaña se puede ver aquí
  • EDRIC es una organización no gubernamental sin ánimo de lucra registrada en Suecia (no.  802444-3015)
  • EDRIC tiene 27 organizaciones miembro en 19 países - la mayoría de ellos en los países miembros de la UE - y representa 5 000 personas que viven con malformaciones en los miembros. 
  • EDRIC dirige una red online de Dismelia (DysNet) que cuenta con una página web en varios idiomas y frecuentemente actualizada, con actividad en redes sociales (Facebook, Twitter y Youtube), y además tiene un foro multilingüe, RareConnect, para compartir información y apoyo entre afectados. 
  • La Dismelia describe un número de enfermedades extremadamente raras - más detalles están disponibles en DysNet
  • FR

    EDRIC DysNet

    What If?

    COMMUNIQUÉ DE PRESSE

    Une campagne multinationale pour financer conseils et soutien pour parents d'enfants avec des membres invalides est lancée aujourd'hui ( Lundi 15 Septembre). 

    La collecte de fonds est exécutée par un ensemble d'organisations de personnes affectées par la différence congénitale de membres appelée EDRIC ( European Dysmelia Reference Information centre). 

    En partenariat avec la plateforme de financement communautaire,Indiegogo, EDRIC rassemblent des fonds pour créer des ressources en ligne afin que les parents qui ont un enfant dysmelique ( l'ayant su avant ou après le naissance) puissent avoir accès à des informations précises et fiables et qu'ils ne se sentent plus isolés. 

    La campagne - "Et si?- Votre bébé à une différence de membres" - sera diffusée en cinq langues - anglais, français, espagnol, italien et allemand-et sera communiquée sur les réseaux sociaux via des contenus vidéo produits spécialement pour la campagne. 

    Indiegogo

    "Découvrir que votre enfant souffre d'une différence de membres est souvent traumatique pour les parents et nombreux sont ceux qui ne savent où trouver de l'aide" a constaté le Président d'EDRIC Geoff Adams-Spink. 

    "Nous allons mettre en place des sources d'informations en ligne en partenariat avec beaucoup de nos organisations membres ."

    En préparation pour la campagne, EDRIC a entrepris des recherches qui montrent que la majorité des parents ayant des enfants avec des différences congénitales de membres ( appelée dysmelie ) ne savent pas où s'adresser pour obtenir du soutien. 

    Un sondage mené par l'organisation a montré ceci-parmi ceux qui ont déjà répondu, 80% n'étaient au courant d'aucune source d'aide ou conseil pour les soutenir durant les premières années de l'enfant. 

    Quatre répondants ont rapporté qu'on leur avait laissé moins d'une heure pour décider d'interrompre la grossesse ou non après le diagnostic de dysmelie . 

    Un autre répondant dit qu'on lui avait offert une interruption de grossesse dans son cinquième mois.  Il manquait juste une main à l'enfant. 

    "Nous devons redresser cette situation" a déclaré Mr Adams-Spink. 

    Soit les gens sont choqués à la naissance de l'enfant, soit ils ont un échographie et sont dans l'incertitude de continuer ou interrompre la grossesse.  Il est très important à ce stade que les parents ou futurs parents sachent que les personnes dysmeliques mènent des vies tout à fait heureuses et épanouies. 

    La campagne donne le coup s'envoie avec une vidéo de 90 secondes à effet maximal - "Des gens ordinaires- Des vies extraordinaires" qui montrent un nombre de gens avec des déficiences de membres accomplissant des choses incroyables. 

    La campagne a commandé un nombre de courtes vidéos dans lesquelles on demande aux personnes dysmeliques de répondre à la question , " Quelle différence ai-je apporté au monde?". 

    EDRIC espère que les gens seront non seulement inspirés de partager ces vidéos entre amis et famille mais aussi de faire part de leurs propres contributions pouvant être utilisées dans la campagne. 

    La campagne d'EDRIC ' Et si,' a pour but de recueillir 30,000 Euros pour financer des ressources en ligne. 

    FIN

    NOTES POUR EDITEURS

  • Pour toute information complémentaire, contactez le Président d'EDRIC, Geoff Adams-Spink par courriel à geoff.adams-spink@edric.eu ou appeler +44 7711 898787
  • La campagne utilise la plateforme Indiegogo pour réunir des fonds -des informations complémentaires peuvent être trouvées sur le site Indiegogo
  • La video de lancement de la campagne peut être vue ici
  • The European Dysmelia Reference Information Centre est une ONG sans but lucratif enregistrée en Suède ( no.  802444-3015)
  • EDRIC comptent 27 organisations membres dans 19 pays- la majorité étant des états membres de la Communauté Européenne - et représente 5,000 personnes vivant avec une différence de membres
  • EDRIC gère un réseau de Dysmelie en ligne (DysNet) soutenu par un site multilingue et fréquemment mis à jour, soutenu par une activité de réseaux sociaux sur Facebook, Twitter et YouTube, et bénéficie d'un forum multilingue en ligne, RareConnect, pour partage d'information et soutien par les pairs
  • La Dysmelie décrit un nombre de conditions extrêmement rares- des détails supplémentaires sont à votre disposition auprès de DysNet
  • EN

    EDRIC DysNet

    What If?

    PRESS RELEASE

    A multi-national campaign to fund advice and support services for the parents of children born with limb disabilities is being launched today (Monday September 15). 

    The fundraising drive is being run by an umbrella body of organisations of people affected by congenital limb difference called EDRIC (European Dysmelia Reference Information Centre). 

    In partnership with crowdfunding platform, Indiegogo, EDRIC is raising funds to create online resources so that parents who have a child with a limb difference (whether they know before or after the birth) are able to access accurate and reliable information and no longer feel isolated. 

    The campaign - "What If? - Your Baby Has a Limb Difference" - will run across five languages - English, French, Spanish, Italian and German - and will rely upon social media and specially produced video content in order to spread the word. 

    Indiegogo

    "Having a child with a limb difference often comes as a shock to parents, many of whom don't know who to turn to for help," said EDRIC Chairman Geoff Adams-Spink. 

    "In partnership with many of our member organisations, we are going to set up online information sources."

    In preparation for the campaign, EDRIC has undertaken research that shows that the majority of parents of children with congenital limb difference (known as dysmelia) don't know where to turn to for support.  A survey conducted by the organisation shows that - of those who have already responded - 80% were not aware of any sources of help or advice to support them during their child's early years. 

    Four respondents reported that they were given less than an hour to decide whether or not to terminate pregnancy after a diagnosis of limb difference.  Another respondent says she was offered a termination five months into the pregnancy - her child had just one hand missing. 

    "We need to turn this situation around," said Mr Adams-Spink. 

    "People are either shocked when their child appears or they have an ultrasound scan and are unsure whether or not to proceed with the pregnancy.  It's important, at this time, that parents or parents to-be are aware that people live happy and fulfilled lives with a limb difference."

    The campaign kicks off with a high-impact, 90-second video - "Ordinary People - Extraordinary Lives" - that shows a number of people with limb disabilities doing amazing things. 

    The campaign has commissioned a number of short videos in which people living with limb difference are asked to answer the question, 'what difference have I made to the world?'.  EDRIC hopes that people will not only be inspired to share these videos with friends and family but will, when appropriate, record their own contributions for use in the campaign. 

    EDRIC's 'What If?' campaign aims to raise 30,000 Euros to fund online resources. 

    /ENDS

    NOTES FOR EDITORS

  • For further information please contact EDRIC Chairman, Geoff Adams-Spink by email: geoff.adams-spink@edric.eu or call +44 7711 898787
  • The campaign is using the Indiegogo platform in order to raise funds - further information can be found on the Indiegogo website
  • The campaign's launch video can be seen here
  • The European Dysmelia Reference Information Centre is a non-profit NGO registered in Sweden (no.  802444-3015)
  • EDRIC has 27 member organisations in 19 countries - the majority of them EU member states - and represents 5,000 people living with limb difference
  • EDRIC runs an online Dysmelia Network (DysNet) supported by a frequently-updated, multi-lingual website, supported by social media activity on Facebook, Twitter and YouTube, and has an online multi-lingual forum, RareConnect, for information sharing and peer support
  • Dysmelia describes a number of extremely rare conditions - further details are available from DysNet
  • Touch Bionics, a provider of world-leading prosthetic technologies, has announced several enhancements to the livingskin™ product line at the OTWorld 2014 International Congress taking place in Leipzig, Germany. 
    TouchBionics

    Key developments include:

    • My livingskin™ - revolutionary iPad color capture system designed for easy and fast ordering of passive functional prostheses or customized coverings
    • I-limb™ skin natural coverings - improved design offers 18 different shades, more realistic nails, and easier technique to don or doff
    • I-limb skin match coverings - new design allows patients to further customize i-limb covers with features such as nails, freckles, or veins

    Customizing i-limb covers
    Customizing i-limb covers

    "The release of my livingskin represents significant progress towards streamlining the fitting process for our livingskin prostheses and i-limb skin match coverings," said Ian Stevens, CEO of Touch Bionics.  "We are confident that the innovative mobile system will result in delivery of the highest quality products designed to closely match a patient's skin tone and appearance."

    Find out more at the TouchBionics website.

    21/05/14: EDRIC (centro di riferimento informativo europeo sulla dismelia), organizzazione internazionale sulla disabilità che aiuta le persone affette da anomalie congenite agli arti (dismelia), ha designato un nuovo membro del direttivo arrivando a quota sette. 

    Giuliana Corrado è una psicologa con pluriennale esperienza che collabora attivamente con l'Associazione Thalidomidici Italiani, TAI Onlus.  E' entrata a far parte del consiglio, in precedenza composto da sei membri, cinque dei quali affetti essi stessi da anomalia congenita agli arti più un altro membro, padre di un bambino dismelico. 
    Giuliana Corrado
    La dott.ssa Corrado ha esperienza in formazione, comunicazione, educazione, interviste motivazionali, orientamento scoalstico e lavorativo, promozione della salute e progettazione sociale.  Oltre alla laurea quinquennale in Psicologia a Padova, indirizzo del lavoro e delle organizzazioni, ha conseguito un master in Esperto dela Formazione e Gestione in Organizzazioni del Terzo Settore all'Università di Padova e in Psicologia della salute alla City University di Londra. 

    Il presidente di EDRIC, Geoff Adams-Spink, ha dichiarato: "Sono davvero felice che EDRIC abbia attirato un candidato per il consiglio con qualifiche così notevoli per il ruolo.  Giuliana rappresenterà un grande patrimonio per l'associazione, e porterà esperienza linguistica , professionale e conoscenza, elementi fortemente necessari al nostro gruppo di lavoro.  In particolare ci teniamo molto a curare la nostra presenza nei social media in modo da rispecchiare le lingue in cui ad oggi operiamo. 

    Giuliana ha dichiarato "mi sento molto fortunata a entrare a far parte di un team di lavoro così dedito alla causa e interessante.  La missione di EDRIC è mettere in rete tutte le persone affette da anomalie congenite agli arti e personalmente sono pronta a dare il mio contributo per la realizzazione di questo obiettivo.  So dalla mia esperienza con la TAI Onlus che la voce delle persone assume maggior forza quando agiscono in gruppo muovendosi come un fronte unito". 

    EDRIC ha attualmente 24 organizzazioni membre in 17 paesi (principalmente europei) che rappresentano più di 5.000 persone con condizioni estremamente rare che vengono classificate col termine generico di dismelia. 

    L'organizzazione ha usato negli ultimi due anni strumenti online e social media per espandersi velocemente.  E' in programma per il prossimo anno una conferenza in Svezia che riguarderà una campagna di micro donazioni; servirà a raccogliere fondi per assistere i genitori che devono affrontare una diagnosi di dismelia nel momento dei controlli ecografici della gravidanza. 

    La presenza online di EDRIC avviene attraverso il suo "Network sulla Dismelia", Dysnet.  Il sito è attualmente disponibile in 5 lingue (inglese, italiano, tedesco, spagnolo e francese).  Oltre ai tradizionali canali sui social media, offre anche un forum sicuro e ben moderato, RareConnect, gestito da EURORDIS e NORD, gli organismi ombrello sulle malattie rare di Europa e Nordamerica, che offre traduzioni realizzate da persone fisiche. 

    /FINE

    Per maggiori informazioni contattare Geoff Adams-Spink scrivendo a oppure chiamando il numero +44 7711898787. 

    Per informazioni in italiano contattare Giuliana Corrado scrivendo a oppure chiamando il numero +39 328 1821159. 

    Il sito di EDRIC/DysNet è .  Twitter: @DysNet_org.  Facebook:

    Dismelia è il termine medico utilizzato per indicare le anomalie congenite agli arti.  Include un'ampio spettro di condizioni rare.

    English

    May 21, 2014: EDRIC (European Dysmelia Reference Information Centre), an international disability organisation that helps people affected by congenital limb difference (known as dysmelia), has appointed a new board member, bringing the total to seven.


    Giuliana Corrado is an experienced psychologist who works closely with the Italian thalidomide organisation, TAI Onlus.  She joins six existing board members, five of whom have congenital limb differences themselves, and one of whom is the father of a dysmelic child. 
    Giuliana Corrado
    Ms Corrado has a background in training, communication, education, motivational interviews, career and vocational counselling, health promotion and social projects.  As well as her masters degree in psychology and non-profit management from the University of Padova, she also has an MSc in health psychology from London's City University

    EDRIC chairman, Geoff Adams-Spink, said: "I'm really happy that EDRIC has attracted a candidate for board membership with such impressive qualifications for the job.  Giuliana is going to be a great asset to the organisation and will bring much-needed professional and linguistic experience and knowledge to our group.  In particular, we're very keen that our social media presence reflects the languages in which we currently operate."

    Giuliana Corrado said, "I feel very fortunate to be joining such a dedicated and impressive team of people.  EDRIC's mission is to connect everyone affected by congenital limb difference and I am now ready to play my part in helping it towards its goal.  I can see, from my experience with TAI Onlus, that people have a much stronger voice when they act together and present a united front to the world."

    EDRIC now has 24 member organisations in 17 (mainly European) countries - representing more than 5,000 people with the group of extremely rare conditions that come under the generic term, dysmelia. 

    The organisation has used online and social media tools to expand rapidly in the past two years.  It is planning to hold a major conference in Sweden next year and is about to embark upon a micro-donation campaign which will raise money to assist parents who are faced with a diagnosis of dysmelia at the scan stage of pregnancy. 

    EDRIC's online presence is via its 'Dysmelia Network' or DysNet.  Its website is now in five languages (EN, IT, DE, ES and FR).  In addition to mainstream social media channels, it has a secure and moderated forum with human translation called RareConnect which is run by EURORDIS and NORD, the European and North American rare disease umbrella bodies. 



    /ENDS

    For more information, please contact Geoff Adams-Spink at or call +44 7711898787. 
    For information in Italian, contact Giuliana Corrado via or call +39 328 1821159. 
    The EDRIC/DysNet website is at .  Twitter: @DysNet_org.  Facebook:
    Dysmelia is the medical term for congenital limb deficiency.  It covers a wide range of rare conditions.

    In an exciting development for limb difference in the UK, our member, Reach, is joining forces with STEPS to assist children with both upper and lower limb difference.  Who knows, other countries might want to follow their example?

    The two UK charities for children with limb conditions, Reach - Association for Children with Upper Limb Deficiency and STEPS Charity Worldwide will be launching a new joint website at the Primary Care and Public Health Conference at the NEC on Wed 21 May 2014.  It is aimed at providing information and signposts to healthcare professionals when they are faced with new parents who are affected by limb conditions. 

    Reach and STEPS join forces for limb difference
    Reach and STEPS join forces for limb difference


    'It is hoped that the new website will become the one stop signpost for all information about children and limb conditions,' stated Vice Chairman of Reach, Gary Phillips, one of the driving forces behind the joint venture.  'We hope it will help doctors, midwifes and health visitors to locate information on limb conditions quicker and easier and be able to pass on the details to families when they most need support that our charities can offer.'

    Visitors to the website will be able to select the type of limb condition they wish to know more about and by clicking the relevant section will be directed to the specific pages of the either Reach's or STEPS' main websites. 

    The website will be launched at the conference and you will be able to pick up postcards and stickers giving you details of the venture from their stand in the exhibition hall. 

    CEO of STEPS, Tim McLachlan, who proposed the joint website idea, said, 'we are really pleased to be working together to get our messages out to as many healthcare professionals as possible.  We share a number of goals with Reach and we were delighted they agreed to be part of this joint venture'.  He added 'with information overload for professionals we hope that the website address will be easy to give to parents when they are told that their child is affected by a limb condition including hip dysplasia.'

    The web address is

    /ENDS

    Note to Editors:
    Reach Charity Ltd (Reach - Association for Children with Upper Limb Deficiency) is a UK based charity.  Registered Charity No 1134544 Company No 07054164. 
    Further information can be obtained from their website
    Contact for Reach: Jo Dixon, National Co-ordinator on 0845 1306225 or email jod@reach.org.uk
    -----------------------------
    Steps Charity Worldwide is a UK based charity.  Registered Charity No 1094343 Company No 4379997
    Further information can be obtained from their website
    Contact for Steps: Tim McLachlan, CEO on 01925 750 271 or email tim@steps-charity.org.uk

    Patients Know Best (PKB) has teamed up with EDRIC, a European-wide membership organisation for people with Dysmelia - congenital limb differences - to help Dysmelia patients obtain the very best care wherever they live in the European Union (EU). 

    Using Patients Know Best - the world's first fully patient-controlled electronic medical records system - EDRIC will help doctors comply with the patients' country of origin requirements.  Patients Know Best will host the medical records across countries and the patient controlled technology of the system complies with EU legislation - for the first time. 

    The partnership will facilitate patient access to the most knowledgeable clinicians in Europe's top Dysmelia centres of excellence - such as Sweden's Ex Center, a world-renowned centre for rehabilitation and information.  EDRIC will also help patients to navigate complex EU insurance and legal requirements to enable cross border health care in order to obtain the best possible clinical services. 

    Through Patients Know Best, EDRIC captures the often highly complex nature of a Dysmelia patient's medical history and makes it far simpler for attending clinicians located anywhere in Europe to quickly understand the interrelated nature of a patient's health problems - improving diagnosis and treatment. 

    Tobias Arndt, chief operating officer of EDRIC said: "Our partnership with Patients Know Best is very important as for the first time, it will give patients with rare conditions like Dysmelia access to the very best clinicians in the very best hospitals - regardless of where they live in the EU."

    "Our members often have complex, interrelated health care needs that are often too difficult for local doctors and single specialist clinicians to tackle.  Through providing clinicians with more relevant and detailed information about a patient's medical history, we hope this new partnership will help our members help themselves to better health and better lives."

    Operating like a 'secure Facebook', Patients Know Best integrates fully into any medical records system, including the NHS secure network, and is available for use by any patient with any clinician anywhere in the world.  The Patients Know Best-based system enables Dysmelia patients to contact specialist doctors anywhere in Europe through a secure messaging system and ensures that a patient's different specialist clinical teams - of which there can be many - have a single view of their medical history. 

    Dr Mohammad Al-Ubaydli, founder and CEO of Patients Know Best said: "Whilst all EU patients are entitled to cross-border healthcare, so far there have been many difficulties with bureaucracy, IT and privacy.  The doctor must treat using what is covered by the patient's country - not the doctor's country - and until Patients Know Best, there has been no way to share patient records between countries and no system which has complied with the EU's data protection act.  Our partnership with EDRIC overcomes these challenges for the first time."

    Patients Know Best has already been translated into Dutch, Spanish and German by UMC St Radboud.  Working with EDRIC, the system will also be translated into Swedish, Italian and French. 

    ***
    Notes to editors
    ccessing cross-boarder healthcare challenges discussed here:
    More information on Sweden's Ex Center here:

    About EDRIC
    EDRIC - the European Dysmelia Reference Information Centre - is a pan-European, not-for-profit-organisation registered in Sweden.  It is governed by a board of seven individuals, six of whom have lived experience of Dysmelia. 
    EDRIC has 23 member organisations and members of its Dysnet webservices in 19 countries representing about 3 000 individuals. 
    Dysmelia is a generic term for a group of extremely rare conditions - for example Thalidomide syndrome, Poland syndrome and Polydactyly.  The DysNet website () has a full list of conditions. 
    DysNet is on Facebook, Twitter, LinkedIn, YouTube and Google+.  It also has a multi-lingual (EN, DE,IT, FR, ES) forum, RareConnect, hosted by EURORDIS and NORD, the European and North American rare disease umbrella bodies. 

    About Patients Know Best
    Patients Know Best is the world's first patient-controlled medical records system.  It is a fully secure online tool which enables patients to better organise, manage and control their own health care provision - it also saves the time of physicians through allowing secure, online consultations.  Founded by Dr.  Mohammad Al-Ubaydli, a physician, programmer and expert in IT in healthcare, Patients Know Best has won social enterprise awards for its focus on patient care.  Patients Know Best's first customers include Great Ormond Street Hospital, St Marks Hospital and NHS South Devon.  Patients Know Best integrates fully into the NHS secure network and is available for use by any patient with any clinician anywhere in the world.  It is now used by over 30 hospitals in the UK, USA, Holland, Australia and Hong Kong.  Patients Know Best complies fully with UK NHS and data protection requirements as well as the EU data protection act and US HIPAA legislation for dealing with medical data. 

    Contact
    Chris Smith, Swarm Communications,
    0044 7989 321 743
    chris@swarmcommunications.com

    Dr Mohammad Al-Ubaydli, Patients Know Best
    0044 7724 189 415
    mohammad@patientsknowbest.com

    EDRIC's Media Manager
    Caroline George
    +44 7715 559125
    caroline.george@edric.eu

    EDRIC's Chief Operating Officer
    Tobias Arndt
    ++32 483 736 519
    tobias.arndt@edric.eu

    ends/

    PRESS RELEASE - FOR IMMEDIATE RELEASE

    International Limb Difference Network Appoints Inspirational Speaker, Sabine Becker, as Patron

    October 8, 2013

    The European Dysmelia Reference Information Centre (EDRIC) - a confederation of organisations for people affected by dysmelia - has agreed to appoint Sabine Becker, a German-born US citizen, as its fourth patron. 

    Ms Becker is a thalidomide survivor who moved to the US during adulthood and has taken American citizenship.  As well as having severely shortened upper limbs, she recently survived a major stroke from which she is now almost completely recovered.  She works as an inspirational speaker, sharing her experiences of overcoming adversity. 

    She joins Swedish motivational speaker, Mikael Andersson, former US paralympian, Bonnie St John, and British artist, Alison Lapper, in the line-up of EDRIC patrons. 

    Sabine Becker said:

    "I am happy to see that there is finally an information site for people with limb deficiencies.  Growing up without arms would have been easier, if we'd had such a vast source of information and peer support available to us.  I am honoured to be part of EDRIC and to make a difference in people's lives who are affected by upper limb deficiency."

    EDRIC was founded by two of Europe's leading groups representing thalidomide survivors - the UK-based Thalidomide Trust and the Swedish FfdN.  Its aim is to give everyone affected by the variety of extremely rare conditions that come under the generic title, dysmelia, the most accurate, up-to-date and reliable information about their condition.  Having already established a peer-to-peer support network, DysNet, the organisation is now building a parallel network for experts in dysmelia. 

    EDRIC's Chairman Geoff Adams-Spink commented:

    "I'm so pleased that Sabine has agreed to assist us.  She was already an extraordinary and exemplary individual before having her stroke.  Now, she has proved that her abilities to adapt and survive are an essential tool in overcoming the further impairments that have resulted from her stroke.  She is an example both to her peers and to younger people affected by dysmelia who may well be wondering how to get on in life."

    Ms Becker takes up her appointment as patron immediately. 

    /ENDS

    Notes for editors:

    · For further information and to arrange interviews, contact EDRIC's Media Manager, Caroline George on +44 7715 559125 or caroline.george@edric.eu
    · Sabine Becker's website is at: and is on Twitter @SabineBecker5.  She can be interviewed in English or German. 
    · EDRIC - the European Dysmelia Reference Information Centre - is a pan-European, not-for-profit organisation registered in Sweden.  It is governed by a board of seven individuals, six of whom have lived experience of Dysmelia. 
    · EDRIC has 23 member organisations representing people in 18 countries. 
    · Dysmelia is a generic term for a group of extremely rare conditions - for example thalidomide syndrome, Poland syndrome and polydactyly.  The DysNet website has a full list of conditions. 
    · DysNet is on Facebook, Twitter, LinkedIn, YouTube and Google+.  It also has a multi-lingual (EN, DE, IT, FR, ES) forum, RareConnect, hosted by EURORDIS and NORD, the European and North American rare disease umbrella bodies.

    PRESS RELEASE - FOR IMMEDIATE RELEASE

    24/09/13

    European Congenital Limb Difference Network (EDRIC) Takes its Vision of a Connected Future to Europe's Leading Disability Exhibition, Rehacare. 
    image left The European Dysmelia Reference Information Centre (EDRIC) announces its participation in Rehacare 2013 (September 25th to 28th) - the world's largest exhibition and convention on disability in Düsseldorf, Germany. 

    rehacare.com

    The organisation will be represented by a team including Deputy Chairman, Björn Håkansson, Secretary, Monika Eisenberg-Geginat, and Chief Operating Officer, Tobias Arndt.  As well as having a stand in Hall 5 (no B34), the team will be active on social media (especially Twitter) and looks forward to meeting companies interested in reaching the global limb difference community by advertising on EDRIC's dysmelia network website, DysNet, and by forming partnerships. 

    The umbrella organisation for people with congenital limb differences represents the interests of 23 organisations with nearly 3,000 members in 18 countries.  The focus of this year's activities is EDRIC's plan to create a sophisticated network structure that will result in people with congenital limb differences being able to talk to experts and access treatment and services across borders.  The foundations for this are already laid with a peer-network - DysNet () - and an electronic library - the Dysmelia Knowledge Base (DKB), launched in 2012. 

    DysNet and DKB are now launched in multi-lingual versions for Rehacare and available in all five major European languages - English, German, French, Italian and Spanish.  The next step is an expert network - the Dysmelia Expert Forum for which nearly 50 experts and practitioners from 15 countries have already confirmed their participation. 

    Speaking prior to the opening of Rehacare, EDRIC's Chairman, Geoff Adams-Spink, said:

    "Our vision is to give everyone affected by the number of rare conditions that come under the generic term, dysmelia, the most up-to-date, accurate and reliable information about their condition.  At present, people living with rare conditions like dysmelia experience significant health inequalities - something that we are committed to overcoming."

    One goal of this network activity is to lay the foundation for a reference network at European level.  This network will enable health services where none are available today, by exchange of knowledge and support among the participants within the network. 

    "Our plan to bring those affected by dysmelia and the expert practitioners and providers together will be called DysERN - Dysmelia European Reference Network.  When it is realised, it will significantly improve the health care situation of people with dysmelia and other limbs deficiencies.  At local level, doctors will receive support from specialists and patients can be referred for treatment to centres of expertise in other European countries," said Adams-Spink. 

    In addition, the network will provide basic software solutions for health management - an electronic health record, e-learning and e-training, an electronic consultations module and a service catalogue. 

    EDRIC's presence at Rehacare is aimed at outlining this vision to stakeholders and explaining to companies the benefits of advertising their products and services to a niche audience. 

    [DISGUISED#Pressemitteilung - Zur sofortigen Freigabe

    24/09/13

    EDRIC auf Rehacare 2013
    Das Europäische Netzwerk für Dysmelie (EDRIC) präsentiert seine Vision einer vernetzten Zukunft auf Europas führender Messe für Behinderungen

    EDRIC - das Europäische Dysmelia Referenz und Informations-Center - kündigt seine Teilnahme an der Rehacare 2013 (25.  bis 28.  September) an - die weltweit größte Fachmesse und Kongress zum Thema Behinderungen. 

    Die Organisation wird von einem Team bestehend aus dem Vize-Präsidenten, Björn Håkansson, der Generalsekretärin, Monika Eisenberg-Geginat, und dem Chief Operating Officer, Tobias Arndt vertreten.  Abgesehen von dem Stand in Halle 5 (Nr B34), wird das Team über soziale Medien (insbesondere Twitter) aktiv sein, und freut sich auf Kontakte und Gespräche mit potenziellen Partnern für neue Lösungen zur Überwindung von Gliedmaßeneinschränkungen sowie Werbekunden für EDRICs Netzwerk-Website DysNet. 

    Die Dachorganisation für Menschen mit angeborenen Gliedmaßenschädigungen vertritt die Interessen von 23 Organisationen mit fast 3000 Mitgliedern in 18 Ländern.  Im Mittelpunkt der diesjährigen Aktivitäten steht EDRICs Pläne für eine innovative und komplexe Netzwerkarchitektur, die Patienten, die von seltenen Dysmelie-Erkrankungen betroffen sind, mit Experten und Gesundheitsservices auch über Grenzen hinweg zusammenbringt.  Dafür konnte bereits mit einem Peer-Netzwerk - DysNet () und einem einer elektronischen Wissensbibliothek - Dysmelia Knowledge Base (DKB) in 2012 ein wichtiger Grundstein ans Netz gehen. 

    DysNet und DKB wurden anlässlich der Rehacare in allen fünf bedeutenden Europäischen Sprachen - Deutsch Englisch, Französisch, Italienisch und Spanisch gelauncht.  Als nächster Schritt folgt ein Expertennetzwerk - Dysmelia Expert Forum, an dem bereits fast 50 Experten und Mediziner aus 15 Ländern ihre Teilnahme zugesagt haben. 

    Vor der Eröffnung der Rehacare stellte der Vorstandsvorsitzende von EDRIC Geoff Adams-Spink heraus:

    "Unsere Vision ist es, jedem der von einer seltenen Störung unter dem Oberbegriff Dysmelie betroffen ist, aktuelle, genaue und verlässliche Gesundheitsinformationen und zugänglich zu machen.  Derzeit, leiden Menschen mit Dysmelie unter erheblichen Gesundheits-Ungleichbehandlungen, wir sind angetreten, das zu ändern"

    Ein Ziel dieser Netzwerkaktivitäten ist es, die Grundlage für ein Referenznetzwerk auf Europäischer Ebene zu legen.  Dieses Netzwerk wird Gesundheitsleitungen dort ermöglichen, wo heute keine Versorgung vorhanden ist, indem Wissen und Unterstützung unter den Teilnehmern des Netzwerks ausgetauscht und verfügbar gemacht werden. 

    "Unser Projekt mit dem wir Menschen mit Dysmelien und Gesundheitsdienstleister zusammenbringen werden, heißt DysERN - das Dysmelia European Reference Network.  Es wird die Gesundheitsversorgung von Menschen mit Dysmelie und anderen Gliedmaßeneinschränkungen erheblich verbessern.  Auf lokaler Ebene erhalten Ärzte Unterstützung von Fachzentren und umgekehrt können Patienten zur Behandlung an Fachzentren auch im europäischen Ausland überwiesen werden", erklärte Adams-Spink . 

    Darüber hinaus wird das Netzwerk grundlegende Softwarelösungen für das Gesundheitsmanagement - eine elektronische Patientenakte, eLearning und eTraining, sowie eine elektronische Sprechstunde, einen Katalog für Hilfsmittel und vieles mehr anbieten. 

    EDRICs Teilnahme auf der Rehacare hat zum Ziel, dieses Programm Interessengruppen zu erläutern, sowie Firmen die Vorteile einer Zusammenarbeit im Bereich Partnerschaften und Werbung für ihre Produkte und Dienstleistungen für eine Nischengruppe zu verdeutlichen. 

    ENDE/


    Weitere Informationen:

    · EDRIC ist auf der Rehacare Messe Düsseldorf in Halle 5 Stand B34 vom 25.  bis 28.  September (Öffnungszeiten: 10 - 18 Uhr, Samstag bis 17Uhr) erreichbar.  So erreichen Sie uns auf der Messe: Monika Eisenberg-Geginat unter +49 172 882 38 46, Björn Håkansson unter +46 70 564 1388, Tobias Arndt unter +32 483 736 519. 
    · Für weitere Informationen und für Interviews auf Deutsch oder Englisch, kontaktieren Sie bitte EDRICs Media Manager, Caroline George unter +44 7715 559125 oder caroline.george{AT}edric.eu. 
    · EDRIC - das Europäische Dysmelie Referenz Informations Center - ist eine paneuropäische, Non-Profit-Organisation, die in Schweden registriert ist.  Sie wird von einem siebenköpfigen Vorstand geleitet, von denen sechs Mitglieder persönlich Erfahrungen mit Dysmelie haben. 
    · EDRIC has 23 Mitgliedsorganisationen, die 3000 Menschen in 13 Ländern vertreten. 
    · Dysmelie ist ein Oberbegriff für eine Gruppe seltener Erkrankungen und Störungen - z.B.  dem Contergan-Syndrom, Poland Syndrom und Polydactylie.  Auf der DysNet Website finden Sie eine Liste dieser Erscheinungsbilder. 
    · DysNet ist auf Facebook, Twitter, LinkedIn, YouTube und Google+.  Es unterhält auch ein mehrsprachiges (EN, DE, IT, FR, ES) Forum unter RareConnect, gehosted von EURORDIS und NORD, der europäischen und nordamerikanischen Dachorganisationen für seltene Erkrankungen. 
    ]
    ENDS/


    Notes for editors:

    · EDRIC's stand is located in Hall 5, number B34 at the Düsseldorf Messe Exhibition Centre, September 25th -28th, from 10.00 to 18.00 (Saturday until 17.00).  The team can be contacted as follows: Monika Eisenberg-Geginat +49 172 882 38 46, Björn Håkansson +46 70 564 1388, Tobias Arndt +32 483 736 519. 
    · For further information and to arrange interviews, contact EDRIC's Media Manager, Caroline George on +44 7715 559125 or caroline.george@edric.eu
    · EDRIC - the European Dysmelia Reference Information Centre - is a pan-European, not-for-profit organisation registered in Sweden.  It is governed by a board of seven individuals, six of whom have lived experience of dysmelia. 
    · EDRIC has 23 member organisations in 13 countries. 
    · Dysmelia is a generic term for a group of extremely rare conditions - for example thalidomide syndrome, Poland syndrome and polydactyly.  The DysNet website has a full list of conditions. 
    · DysNet is on Facebook, Twitter, LinkedIn, YouTube and Google+.  It also has a multi-lingual (EN, DE, IT, FR, ES) forum, RareConnect, hosted by EURORDIS and NORD, the European and North American rare disease umbrella bodies.

    Pressemitteilung - Zur sofortigen Freigabe

    24/09/13

    EDRIC auf Rehacare 2013
    Das Europäische Netzwerk für Dysmelie (EDRIC) präsentiert seine Vision einer vernetzten Zukunft auf Europas führender Messe für Behinderungen. 

    EDRIC Besucht Rehacare 2013

    EDRIC - das Europäische Dysmelia Referenz und Informations-Center - kündigt seine Teilnahme an der Rehacare 2013 (25.  bis 28.  September) an - die weltweit größte Fachmesse und Kongress zum Thema Behinderungen. 

    rehacare.de/

    Die Organisation wird von einem Team bestehend aus dem Vize-Präsidenten, Björn Håkansson, der Generalsekretärin, Monika Eisenberg-Geginat, und dem Chief Operating Officer, Tobias Arndt vertreten.  Abgesehen von dem Stand in Halle 5 (Nr B34), wird das Team über soziale Medien (insbesondere Twitter) aktiv sein, und freut sich auf Kontakte und Gespräche mit potenziellen Partnern für neue Lösungen zur Überwindung von Gliedmaßeneinschränkungen sowie Werbekunden für EDRICs Netzwerk-Website DysNet. 

    Die Dachorganisation für Menschen mit angeborenen Gliedmaßenschädigungen vertritt die Interessen von 23 Organisationen mit fast 3000 Mitgliedern in 18 Ländern.  Im Mittelpunkt der diesjährigen Aktivitäten steht EDRICs Pläne für eine innovative und komplexe Netzwerkarchitektur, die Patienten, die von seltenen Dysmelie-Erkrankungen betroffen sind, mit Experten und Gesundheitsservices auch über Grenzen hinweg zusammenbringt.  Dafür konnte bereits mit einem Peer-Netzwerk - DysNet () und einem einer elektronischen Wissensbibliothek - Dysmelia Knowledge Base (DKB) in 2012 ein wichtiger Grundstein ans Netz gehen. 

    DysNet und DKB wurden anlässlich der Rehacare in allen fünf bedeutenden Europäischen Sprachen - Deutsch Englisch, Französisch, Italienisch und Spanisch gelauncht.  Als nächster Schritt folgt ein Expertennetzwerk - Dysmelia Expert Forum, an dem bereits fast 50 Experten und Mediziner aus 15 Ländern ihre Teilnahme zugesagt haben. 

    Vor der Eröffnung der Rehacare stellte der Vorstandsvorsitzende von EDRIC Geoff Adams-Spink heraus:

    "Unsere Vision ist es, jedem der von einer seltenen Störung unter dem Oberbegriff Dysmelie betroffen ist, aktuelle, genaue und verlässliche Gesundheitsinformationen und zugänglich zu machen.  Derzeit, leiden Menschen mit Dysmelie unter erheblichen Gesundheits-Ungleichbehandlungen, wir sind angetreten, das zu ändern"

    Ein Ziel dieser Netzwerkaktivitäten ist es, die Grundlage für ein Referenznetzwerk auf Europäischer Ebene zu legen.  Dieses Netzwerk wird Gesundheitsleitungen dort ermöglichen, wo heute keine Versorgung vorhanden ist, indem Wissen und Unterstützung unter den Teilnehmern des Netzwerks ausgetauscht und verfügbar gemacht werden. 

    "Unser Projekt mit dem wir Menschen mit Dysmelien und Gesundheitsdienstleister zusammenbringen werden, heißt DysERN - das Dysmelia European Reference Network.  Es wird die Gesundheitsversorgung von Menschen mit Dysmelie und anderen Gliedmaßeneinschränkungen erheblich verbessern.  Auf lokaler Ebene erhalten Ärzte Unterstützung von Fachzentren und umgekehrt können Patienten zur Behandlung an Fachzentren auch im europäischen Ausland überwiesen werden", erklärte Adams-Spink . 

    Darüber hinaus wird das Netzwerk grundlegende Softwarelösungen für das Gesundheitsmanagement - eine elektronische Patientenakte, eLearning und eTraining, sowie eine elektronische Sprechstunde, einen Katalog für Hilfsmittel und vieles mehr anbieten. 

    EDRICs Teilnahme auf der Rehacare hat zum Ziel, dieses Programm Interessengruppen zu erläutern, sowie Firmen die Vorteile einer Zusammenarbeit im Bereich Partnerschaften und Werbung für ihre Produkte und Dienstleistungen für eine Nischengruppe zu verdeutlichen. 

    ENDE/


    Weitere Informationen:

    · EDRIC ist auf der Rehacare Messe Düsseldorf in Halle 5 Stand B34 vom 25.  bis 28.  September (Öffnungszeiten: 10 - 18 Uhr, Samstag bis 17Uhr) erreichbar.  So erreichen Sie uns auf der Messe: Monika Eisenberg-Geginat unter +49 172 882 38 46, Björn Håkansson unter +46 70 564 1388, Tobias Arndt unter +32 483 736 519. 
    · Für weitere Informationen und für Interviews auf Deutsch oder Englisch, kontaktieren Sie bitte EDRICs Media Manager, Caroline George unter +44 7715 559125 oder caroline.george@edric.eu
    · EDRIC - das Europäische Dysmelie Referenz Informations Center - ist eine paneuropäische, Non-Profit-Organisation, die in Schweden registriert ist.  Sie wird von einem siebenköpfigen Vorstand geleitet, von denen sechs Mitglieder persönlich Erfahrungen mit Dysmelie haben. 
    · EDRIC has 23 Mitgliedsorganisationen, die 3000 Menschen in 13 Ländern vertreten. 
    · Dysmelie ist ein Oberbegriff für eine Gruppe seltener Erkrankungen und Störungen - z.B.  dem Contergan-Syndrom, Poland Syndrom und Polydactylie.  Auf der DysNet Website finden Sie eine Liste dieser Erscheinungsbilder. 
    · DysNet ist auf Facebook, Twitter, LinkedIn, YouTube und Google+.  Es unterhält auch ein mehrsprachiges (EN, DE, IT, FR, ES) Forum unter RareConnect, gehosted von EURORDIS und NORD, der europäischen und nordamerikanischen Dachorganisationen für seltene Erkrankungen.

    Multi-lingual flags

    18/09/13 - Il Centro Europeo di Riferimento e Informazione sulla Dismelia (EDRIC) ha appena lanciato la versione multi-lingue del suo popolare sito web DysNet.  Questo sito è ora disponibile nelle cinque maggiori lingue della UE: inglese, tedesco, spagnolo, francese e italiano. 

    L'organizzazione - una confederazione di gruppi che rappresentano le persone affette da diversità congenite degli arti o dismelia - ha lanciato il sito web in inglese nell'aprile del 2012 e il sito attrae già 1600 visitatori alla settimana.  DysNet - Dysmelia Network - è anche presente sui principali canali dei social media. 

    Geoff Adams-Spink, Presidente di EDRIC ha dichiarato:

    "Questa è un'importante pietra miliare nello sviluppo di EDRIC che ci consentirà di raggiungere un maggior numero di utenti non di lingua inglese - siamo molto eccitati dalla possibilità di attrarre ed interloquire con visitatori provenienti da un ampio spettro di nazioni. 

    E' stato sempre nei nostri piani rendere la nostra rete disponibile ed accessibile a utenti di tutte le cinque lingue dell'UE.  EDRIC sarà presente alla più grande esibizione europea sulla disabilità - Rehacare in Düsseldorf - e siamo ora confidenti che potenziali inserzionisti troveranno la nostra offerta più attraente e la considereranno una necessità "

    Oltre alla gestione di DysNet, EDRIC ha nei suoi piani il lancio nel 2014 di un forum per esperti nel campo della dismelia ed eventualmente un meccanismo dove la rete degli utenti ed il forum degli esperti possano interagire. 

    "La nostra visione è di fornire ad ognuno affetto dalla varietà di condizioni rare comprese sotto il generico termine dismelia, le più aggiornate, accurate ed affidabili informazioni relative alla loro condizione.  Al presente, le persone che vivono con condizioni rare come la dismelia sono soggette a disuguaglianze sanitarie - qualcosa che noi siamo fortemente impegnati a superare" ha detto Adams-Spink. 

    ENDS/


    Note per I redattori:

    • Per ulteriori informazioni ed organizzare interviste, contattare la Media Manager di EDRIC, Caroline George al +44 7715 559125 oppure caroline.george@edric.eu
    • EDRIC - Centro Europeo di Riferimento e Informazione sulla Dismelia - è una organizzazione senza profitto pan-Europea, registrata in Svezia.  E' governata da un consiglio direttivo di sette persone, sei delle quali vivono esperienza diretta di dismelia.
    • EDRIC ha 23 organizzazioni membre in 13 nazioni.
    • Dismelia è un termine generico che identifica un gruppo di condizioni estremamente rare - per esempio la syndrome da thalidomide, la syndrome di Poland e la polidattilia.  Il sito DysNet contiene una completa lista di condizioni.
    • DysNet è presente su Facebook, Twitter, LinkedIn, YouTube e Google+.  Ha anche un forum multilingue (EN, DE, IT, FR, ES), RareConnect, ospitato da EURORDIS e NORD, le organizzazioni ombrello Europea e Nord Americana che si interessano delle malattie rare.

    Multi-lingual flags

    18/09/13 - Das Europäische Dysmelie Referenz Informations Center (EDRIC) hat die mehrsprachige Version ihrer populären DysNet Website gelauncht.  Das Netzwerk für Gliedmaßen-Unterschiede ist nunmehr auf Englisch, Deutsch, Italienisch, Französisch und Spanisch und damit in allen fünf großen EU-Sprachen verfügbar. 

    Die Organisation - ein Zusammenschluss von Gruppen, die Menschen mit angeborenen Gliedmaßen-Unterschieden auch Dysmelie genannt vertreten, hat ihre englische Website im April 2012 ins Netz gestellt, die mittlerweile für 1600 unique visitors pro Wochen anzieht.  DysNet - das Dysmelie Netzwerk - ist darüber hinaus auf allen wichtigen sozialen Medien präsent. 

    Geoff Adams-Spink, Vorstandsvorsitzender von EDRIC:

    "Das ist ein wichtiger Meilenstein in EDRICs Entwicklung.  Wir sind dadurch in der Lage, mit Menschen mit Dysmelien über die englischsprachige Welt hinaus Kontakt aufzunehmen.  Wir freuen uns daher auf Besucher und Anhänger aus vielen weiteren Ländern. 

    Es war immer fester Bestandteil unserer Strategie, unser Netzwerk für alle fünf großen EU-Sprachen verfügbar und zugänglich zu machen - Englisch, Deutsch, Französisch, Spanisch und Italienisch.  EDRIC wird auf der Rehacare in Düsseldorf - Europas größter Fachmesse für Behinderungen ausstellen.  Wir sind nun zuversichtlich, dass wir damit den Anforderungen von möglichen Werbekunden und Partner noch weiter entgegen kommen."

    Abgesehen von DysNet plant EDRIC den Start eines Expertenforums für den Bereich Dysmelie in 2014 und schließlich, einen Mechanismus durch den das Peer-Netzwerk und das Expertenforum interagieren können. 

    "Unsere Vision ist es, jedem der von einer seltenen Störung unter dem Oberbegriff Dysmelie betroffen ist, aktuelle, genaue und verlässliche Gesundheits-Informationen zugänglich zu machen.  Derzeit, leiden Menschen mit Dysmelie unter erheblichen Gesundheits-Ungleichbehandlungen, wir sind angetreten, das zu ändern", sagte Adams-Spink. 

    ENDE/


    Weitere Informationen:

    • Für weitere Informationen und für Interviews auf Deutsch oder Englisch, kontaktieren Sie bitte EDRICs Media Manager, Caroline George unter +44 7715 559125 oder caroline.george@edric.eu
    • EDRIC - das Europäische Dysmelie Referenz Informations Center - ist eine paneuropäische, Non-Profit-Organisation, die in Schweden registriert ist.  Sie wird von einem siebenköpfigen Vorstand geleitet, von denen sechs Mitglieder persönlich Erfahrungen mit Dysmelie haben.
    • EDRIC has 23 Mitgliedsorganisationen in 13 Ländern.
    • Dysmelie ist ein Oberbegriff für eine Gruppe seltener Erkrankungen und Störungen - z.B.  dem Contergan-Syndrom, Poland Syndrom und Polydactylie.  Auf der DysNet Website finden Sie eine Liste dieser Erscheinungsbilder.
    • DysNet ist auf Facebook, Twitter, LinkedIn, YouTube und Google+.  Es unterhält auch ein mehrsprachiges (EN, DE, IT, FR, ES) Forum unter RareConnect, gehosted von EURORDIS und NORD, der europäischen und nordamerikanischen Dachorganisationen für seltene Erkrankungen.

    Multi-lingual flags

    18/09/13 - El Centro de Información de Referencia Europeo de Dismelia (EDRIC) acaba de lanzar una versión multilingüe de su sitio web popular DysNet.  El sitio web ya está disponible en los cinco principales idiomas de la UE: inglés, alemán, castellano, francés e italiano. 

    La organización - una confederación de grupos que representan las personas afectadas por defectos congénitos en las extremidades o dismelia - lanzó su página web en inglés en abril de 2012 y ya atrae a 1600 visitantes por semana.  DysNet - The Dysmelia Network - también tiene presencia en todos los canales de los principales medios de comunicación social. 

    Geoff Adams-Spink, presidente de EDRIC dijo:

    "Este es un hito importante en el desarrollo de EDRIC que nos permitirá acercarnos a personas que no hablan inglés - estamos muy emocionados por atraer visitantes e interactuar con seguidores de una amplia gama de países."

    Siempre fue nuestro propósito hacer una red accesible y disponible para los hablantes de las cinco lenguas de la UE. 
    EDRIC estará presente en la exposición más grande sobre la discapacidad de Europa - "Rehacare" en Düsseldorf - y ahora estamos seguros de que los posibles anunciantes encontrarán nuestra oferta mucho más atractiva y convincente."

    Así como se puso en marcha DysNet, EDRIC está planificando lanzar un foro de expertos en el campo de la dismelia en 2014 y, finalmente, un mecanismo mediante el cual los grupos de la red y el foro de expertos puedan interactuar. 

    "Nuestra visión es dar a todos los afectados por alguna enfermedad incluida en el registro de las Enfermedades Raras e incluida bajo el término genérico de dismelia, la información más actualizada, precisa y fiable acerca de su condición.  En la actualidad, las personas que viven con enfermedades raras como la dismelia sufren significativas desigualdades en salud - algo que estamos comprometidos a superar," dijo Adams-Spink. 


    /TERMINA




    Notas para los editores:

    • Para más información y para concertar entrevistas, póngase en contacto con la EDRIC Media Manager, Caroline George en +44 7715 559125 o caroline.george@edric.eu
    • EDRIC - el Centro Europeo de Información y de referencia de Dismelia - es una organización paneuropea, sin ánimo de lucro registrada en Suecia.  Se rige por un consejo de siete personas, seis de los cuales han vivido con la experiencia de la Dismelia.
    • EDRIC cuenta con 23 organizaciones miembros en 13 países.
    • Dismelia es un término genérico para un grupo de condiciones extremadamente raras - por ejemplo, el síndrome de la talidomida, el síndrome de Polonia y Polidactilia.  La página web DysNet tiene una lista completa de las condiciones.
    • DysNet está en Facebook, Twitter, LinkedIn, YouTube y Google+.  También cuenta con una Foro multilingüe (FR, ES EN, DE, IT), RareConnect, organizado por EURORDIS y NORD, el europeo y Norteamericano órganos de coordinación de enfermedades raras.

    Multi-lingual flags

    18/09/13 - EDRIC (European Dysmelia Reference Information Centre) vient de lancer une version multilingue de son site web populaire DysNet.org.  Le site est maintenant disponible dans les cinq langues principales européennes: anglais, allemand, espagnol, français et italien. 

    L'organisation - une confédération des groupes représentant les personnes touchées par les déficiences congénitales des membres - autrement dit la dysmélie - a lancé son site Web en anglais en Avril 2012 qui attire déjà 1600 visiteurs uniques par semaine.  DysNet - le réseau de dysmélie - a également une présence sur tous les canaux principaux des médias sociaux. 

    Geoff Adams-Spink, président d'EDRIC dit:

    «C'est une étape importante dans le développement d'EDRIC qui va nous permettre de tendre la main à plus de locuteurs non anglophones - nous sommes très heureux d'attirer les visiteurs et d'interagir avec les adeptes d'un large éventail de pays. 

    Notre projet a toujours été de rendre notre réseau disponible et accessible aux locuteurs de toutes les cinq langues de l'UE.  EDRIC sera présent au plus grand salon du handicap en Europe - Rehacare à Düsseldorf - et nous sommes maintenant convaincus que les annonceurs et les partenaires potentiels trouveront notre offre plus attrayante et convaincante.»

    De même, l'exécution DysNet et EDRIC envisagent de lancer un forum pour les experts dans le domaine de la dysmélie en 2014 et par la suite, un mécanisme par lequel le réseau de pairs et le forum d'experts pourront interagir. 

    «Notre vision est de donner à toutes les personnes touchées par la dysmélie les informations précises, fiables et actuelles sur leur état.  À l'heure actuelle, les personnes vivant avec des maladies rares comme la dysmélie vivent d'importantes inégalités de santé - quelque chose que nous sommes déterminés à surmonter », a déclaré Adams-Spink. 
    FIN/



    Notes aux medias :

    1. Pour de plus amples informations et pour organiser des entrevues, veuillez communiquer avec le chef de presse d'EDRIC, Caroline George sur +44 7715 559125 ou caroline.george@edric.eu
    2. EDRIC - le Centre européen d'information dysmélie référence - est une organisation pan-européenne sans but lucratif enregistrée en Suède.  Elle est régie par un conseil de sept personnes, dont six ont vécu l'expérience de la dysmélie.
    3. EDRIC compte 23 organisations membres dans 13 pays.
    4. La dysmélie est un terme générique pour un groupe de syndromes extrêmement rares - par exemple le syndrome de la thalidomide, le syndrome de Poland et de polydactylie.  Le site DysNet a une liste complète des syndromes.
    5. DysNet est sur Facebook, Twitter, LinkedIn, YouTube et dispose également d'un forum multilingue (IT, FR, ES FR, DE), RareConnect, organisé par EURORDIS et NORD, l'organisation européenne des maladies rares et son homologue en Amérique du Nord.


    Multi-lingual flags

    18/09/13 - The European Dysmelia Reference Information Centre (EDRIC) has just launched a multi-lingual version of its popular DysNet website.  The site is now available in the five major EU languages: English, German, Spanish, French and Italian. 

    The organisation - a confederation of groups representing people affected by congenital limb difference or dysmelia - launched its English language website in April 2012 and already attracts 1600 unique visitors per week.  DysNet - The Dysmelia Network - also has a presence on all the main social media channels. 

    Geoff Adams-Spink, Chairman of EDRIC said:

    "This is a significant milestone in the development of EDRIC that will enable us to reach out to more non-English speakers - we are very excited about attracting visitors and interacting with followers from a wide range of countries. 

    It was always our plan to make our network available and accessible to speakers of all five EU languages.  EDRIC will be present at Europe's largest disability exhibition - Rehacare in Düsseldorf - and we are now confident that potential advertisers will find our offer so much more attractive and compelling."

    As well as running DysNet, EDRIC is planning to launch a forum for experts in the field of dysmelia in 2014 and eventually, a mechanism whereby the peer-group network and expert forum can interact. 

    "Our vision is to give everyone affected by the number of rare conditions that come under the generic term, dysmelia, the most up-to-date, accurate and reliable information about their condition.  At present, people living with rare conditions like dysmelia experience significant health inequalities - something that we are committed to overcoming," said Adams-Spink. 

    ENDS/


    Notes for editors:

    • For further information and to arrange interviews, contact EDRIC's Media Manager, Caroline George on +44 7715 559125 or caroline.george@edric.eu
    • EDRIC - the European Dysmelia Reference Information Centre - is a pan-European, not-for-profit organisation registered in Sweden.  It is governed by a board of seven individuals, six of whom have lived experience of Dysmelia.
    • EDRIC has 23 member organisations in 13 countries.
    • Dysmelia is a generic term for a group of extremely rare conditions - for example thalidomide syndrome, Poland syndrome and polydactyly.  The DysNet website has a full list of conditions.
    • DysNet is on Facebook, Twitter, LinkedIn, YouTube and Google+.  It also has a multi-lingual (EN, DE, IT, FR, ES) forum, RareConnect, hosted by EURORDIS and NORD, the European and North American rare disease umbrella bodies.

    News Release - For Immediate Release

    European disability organisation "appalled" at treatment of Kazakh artist denied entry to UK

    EDRIC - the European network of limb difference organisations - says it's appalled at reports that a Kazakh artist was denied a UK visa because his absence of arms meant he was unable to provide fingerprints. 

    Karipbek Kuyukov was denied permission to enter the UK last month because he couldn't provide fingerprints.  This was due to the fact that - like many born in the nuclear testing region of Kazakhstan - he was born without arms. 
    EDRIC - the international network of organisations that helps people affected by limb differences - is shocked and appalled by this apparent ignorance and complete lack of regard from the staff of the British Consulate in Istanbul, where Mr Kuyukov applied for his visa to speak at a conference. 

    Geoff Adams-Spink, Chairman of EDRIC said: "Unfortunately, people with disabilities frequently encounter ignorance and discrimination when travelling.  The unfortunate experience of Karipbek Kuyukov underlines the need for awareness training among Home Office and consular officials.  EDRIC exists to draw attention to the needs of everyone living with limb difference.  We are more than ready to engage in dialogue with the UK Government in order to put right this profound injustice."

    EDRIC has 20 member organisations from across Europe under its umbrella with several more planning to join in 2013.  It also operates DysNet - the Dysmelia Network - an online community, bringing together people living with
    limb difference throughout Europe and beyond. 

    ENDS

    1.For further information or to arrange an interview, please contact EDRIC's
    Media Manager, Caroline George (caroline.george@edric.eu) or +44 7715
    559125
    2.The EDRIC/DysNet website is at .  Twitter: @DysNet_org. 
    Facebook:
    3.Dysmelia is the medical term for congenital limb deficiency.  It covers a wide
    range of rarely occurring conditions

    First Chief Operating Officer appointed for expanding
    European disability organisation


    23 April 2013, LONDON: EDRIC, the international disability organisation that helps people affected by limb differences, has appointed its first Chief Operating Officer. 

    Tobias Arndt, who is German and lives in Brussels, will take responsibility for the day-to-day running of EDRIC (European Dysmelia Reference Information Centre), which has undergone rapid expansion in the past year since it launched its DysNet online network. 

    EDRIC now has 20 member organisations from across Europe under its umbrella with several more planning to join in 2013. 

    Following a successful members' meeting in Sweden last year, work is now underway to hold an international "Experts' Conference" in May 2014.  The conference will bring together patient groups, medical practitioners and industry specialists from around the world to share expertise and help to improve the treatment and lives of people living with limb deficiencies. 

    Preparations for this will be escalating throughout the year and so Mr Arndt, who has a background in communications, will also take on the lead role in this project. 

    EDRIC chairman, Geoff Adams-Spink, said, "I'm really happy that EDRIC has been able to secure the professional expertise of someone like Tobias Arndt.  His personal commitment to people affected by dysmelia and his undoubted abilities as a researcher and administrator make him ideally suited to this role.  EDRIC has big plans over the next few years and I'm sure that Tobias will help us to bring them to fruition to the benefit of our network of member organisations and the wider limb difference community."

    Tobias Arndt said, "The next 12 months are going to be a very exciting for EDRIC and I'm really looking forward to working with the board and our member organisations on our Experts' Conference.  DysNet, our online community, has brought us to a wider audience and we can now build on this work to help improve the lives of people living with all types of limb differences throughout Europe and further afield.  The long term project to improve support for the community in a substantial and sustainable manner will be to team with partners for a Dysmelia European Reference Network."

    Tobias Arndt speaks five languages and has previously worked on research, editorial and legal projects for Thalidomide organisations in Belgium, Australia, Germany and the UK. 

    ENDS

    1. For more information, please contact Geoff Adams-Spink at
    2. The EDRIC/DysNet website is at .  Twitter: @DysNet_org .  Facebook:
    3. Dysmelia is the medical term for congenital limb deficiency.  It covers a wide range of rarely occurring conditions.

    Board expanding in 2013 to meet needs of growing success since launch of DysNet online Network

    24 January 2013 Immediate Release

    Three further board members have been appointed to lead EDRIC, the European non-profit organisation set up to help people affected by limb deficiency. 

    Gernot Stracke
    Gernot Stracke
    In 2012, EDRIC (European Dysmelia Reference Information Centre) launched its online network, DysNet, to further its goal of bringing together Europe's often isolated patient groups that help people with all types of limb differences. 

    Since DysNet's launch, last May, EDRIC has recruited 19 organisations from across the continent and in 2013 is looking to expand further.  To enable this, EDRIC has appointed three further directors from member organisations in Germany, Austria and Italy. 

    Gernot Stracke is a board member of HICOHA (Hilfswerk für Contergangeschädigte e.V.  in Hamburg and Schlewsig-Holstein) a German thalidomide organisation.  He is married and has two children. 
    Gernot works as sales manager for an international consulting company with a strong focus on IT-solutions and is also an instructor for speech recognition systems for people with limb deficiency and other disabilities. 

    Michaela Moik
    Michaela Moik
    Michaela Moik is a thalidomide survivor and one of the founders of the Austrian Thalidomide self-help group. 

    Until recently she was a social worker in the Youth Department of Vienna and has three children. 

    Salvatore Giambruno
    Salvatore Giambruno
    Salvatore Giambruno is a longtime board member and past president of RAGGIUNGERE, the Italian limb Deficiency organisation. 

    He is also a past president of LEDHA, a federation of 32 associations representing various disabilities.  He works as sales manager for the touch systems division of a large international corporation. 

    EDRIC Chairman, Geoff Adams-Spink, said: "We've seen so much success in 2012, with the launch of DysNet and our members' meeting, we needed to consolidate our leadership structure.  This will ensure the future smooth running of EDRIC as we continue to campaign for improved access to health, work and creating better lives for individuals living with limb differences. 

    "All three of our new board members have many years of involvement supporting people living with limb differences and I am sure they will bring their diverse and valuable knowledge to benefit EDRIC."

    EDRIC logoLONDON, 20 December 2012: A European-wide organisation set up by a group of thalidomide survivors has welcomed the announcement by the UK government that an £80 million grant has been put aside for over 300 people affected in England. 

    The announcement confirms that the Department of Health will continue to fund ongoing health costs encountered by survivors as a result of their disabilities for the next ten years. 

    EDRIC, which runs the DysNet online network, was set up to bring together thalidomide groups and other organisations dealing with limb loss and deficiency across Europe. 

    Its chairman, Geoff Adams-Spink, a former BBC correspondent said, "This news comes as a huge relief to myself and the several hundred other survivors in England who have to cope every day with the damage caused to us by thalidomide.  It's a sad fact that many affected have not lived to see this day but those who have are in our sixth decade are facing increasing costs to help us stay as healthy and independent as possible."

    In the past year, the company responsible for developing the drug, Grünenthal, issued its first ever apology to survivors across the world whose mothers were given the drug in the 1950s and early 1960s to combat morning sickness.  It was rejected by many as "too little, too late". 

    One woman in Australia, Lynnette Rowe, won a multi-million dollar settlement against Distillers, who sold the drug and its successor, Diageo. 

    The UK government agreed to three years of assistance in 2009 in a pilot funding scheme.  It has also since expressed 'sincere regret' for the physical hardship and emotional difficulties faced by the families affected by thalidomide that was prescribed by the NHS. 

    The award will cover, for example, the cost of personal assistants, expensive adaptations to homes and vehicles and in many cases, wheelchairs, that enable a level of independence. 

    Mr Adams-Spink said, "The effects of thalidomide aren't just what you can see such as shortened arms or legs, but there is also often damage to internal organs, vision and hearing and, as we age, an increasing loss of the mobility we do have."

    His organisation, EDRIC, has this year recruited 17 member groups of people living with limb deficiencies of various types and it intends to hold a conference in 2013 to gather together medical experts and patient groups to help improve patient care for people affected by congenital limb loss and amputations. 

    EDRIC member, the UK's Thalidomide Trust, which administers the funding, has welcomed the award that will be paid through an annual grant. 

    Thalidomide Trust Director, Martin Johnson said, "The announcement of a 10-year continuation of funding for UK thalidomiders on 20th December has been received with great appreciation by the UK group.  We are receiving many emails from beneficiaries saying how this will now enable them to plan various ways of developing their personal support to remain independent.  I believe the news will help many to relax and get on with their lives without the anxiety that has been plaguing them up until now.  One person told me today, 'It is truly brilliant news and will help make life less stressful'."

    One thalidomider, a professional artist, said, he would now be able to employ a part-time studio assistant and a home-carer to help him maintain independence, while another said it would enable them to continue with physiotherapy and the services of a naturopath, as well as make home improvements. 

    The average age is 50 so the grant means that England's 325 Thalidomide survivors, many of whose disabilities mean they cannot work, will receive financial assistance with their living and health needs for the next decade.  Towards the end of this ten year period the Department of Health will review the funding arrangements once again. 

    The Scottish Government has pledged a separate £14.2m over the next ten years to help the 58 Thalidomide survivors in Scotland as they grow older.  Proportionate funding contributions are also expected from the devolved health administrations in Northern Ireland and Wales in the next few days. 


    ENDS

    Editor's Notes:

    1. EDRIC is the European Dysmelia Reference Information Centre.
    2. Dysmelia is the medical term for congenital limb deficency of all types.
    3. The DysNet website is at .  Facebook: Twitter: @DysNet_org
    4. For more information, please contact Tania Tirraoro, PR & Community Manager at tania.tirraoro@dysnet.org or on +447828 140708


    LONDON, 12 July 2012: Limb Difference charities in Europe are calling on Disneyland and other theme park operators to clarify their policies on safety and discrimination after several young people with limb disabilities were banned from rides. 

    EDRIC (European Dysmelia Reference Information Centre), which operates DysNet, a globally-focused limb-difference online network, has been contacted by two of its member charities, Reach in the UK and Assedea in France, after several disabled youngsters were prevented from riding roller-coasters because they had missing limbs. 

    In one case, a young girl, twice refused entry to a ride, was permitted to go on after she and her parents visited customer services to be registered as a disabled passenger. 

    The girl's father said, "We were left shocked when our five year-old daughter, who was born missing her forearm, was stopped from going on by a Disney employee who said it was 'because she doesn't have two hands'.  We have brought our daughter up as if there was no difference to anyone else but in Disney's eyes, she must be registered as disabled."

    In a statement, Disneyland Paris said, "At Disneyland Paris, the majority of our two theme parks' attractions are designed to be accessible to many guests with disabilities or special needs.  However, safety is the primary consideration in all decisions made on the ground by our cast relating to attraction access and this would have been the case with the particular situation you've described. 

    "Furthermore, we work daily to facilitate and improve our guests with disabilities' visits and we are currently reviewing our boarding and accompaniment procedures.  These changes will take effect soon."

    EDRIC chairman, Geoff Adams-Spink said, "As school summer draws near, thousands of people with disabilities will be heading for theme parks across Europe and North America.  The policy on safety and accessibility for those with limb differences seems to be unclear and our members want to know what to expect when they spend large sums of money this summer visiting Disneyland and other parks.  If you can only ride when you've been officially labelled, it would seem it's not really the safety but the fact that Disney are seeking to protect themselves and that isn't the correct message to be sending out."

    Mr Adams-Spink, who was himself born with shortened arms as a result of the drug, thalidomide, said that he would be contacting Disneyland Paris to try to set up a meeting to further clarify their policy on rides for people with limb differences. 

    "While no one wants the safety of individuals with limb deficiencies to be compromised, a blanket policy covering all rides, or forcing people to be labelled as disabled when they don't feel they are, is not acceptable.  It's not rocket science to examine each thrill ride and make safety accommodations for people who are missing upper or lower limbs where possible, so that they too can enjoy everything that Disneyland has to offer. 

    "EDRIC would be delighted to work with Disney to work out a detailed accessibility policy for people with limb differences.  I am happy to meet Disneyland safety officials to develop a more refined policy that does not discriminate against our members."

    EDRIC Assedea Reach

    ENDS

    1.  DysNet was launched by EDRIC in May 2012 to bring together limb difference patient groups and charities around the world to share knowledge and expertise. 
    2.  The DysNet website is at The Reach website is at .  The ASSEDEA website is at
    3.  Disneyland Paris has online information for disabled people in general and accessibility information at the following locations:
    [LINK:HTTP#visit.disneylandparis.co.uk/disabled-visitors and and

    European Limb Loss Day 2012:

    Monday 3 December 2012, LONDON: Charities and organisations from across Europe that support people with limb loss or deficiency are today (Monday 3 December) marking the second European Limb Loss Day. 

    EDRICThe profile of people living with limb difference, whether congenital or through amputation, was raised during the Olympics, with stellar performances from Jonny Peacock, Oscar Pistorius and Sarah Storey, to name just a few. 

    However, despite showing how much some people with limb differences can achieve, many thousands of less athletic people with similar disabilities, face daily difficulties to access expert health care, suitable prosthetics and often, the ability to travel on public transport because of accessibility problems. 

    EDRIC (European Dysmelia Reference Information Centre) that runs the DysNet online Limb Difference Network, has recently launched a survey to get a better picture of what life is like for people living with limb deficiencies across Europe.  It's anticipated the survey will run for several more months and be translated into more languages - at present it is available in English and French.  However, even after just a few weeks, it's clear that many people are forced to travel long distances or across borders to find adequate medical expertise for their conditions. 

    EDRIC chairman, Geoff Adams-Spink said, "This is an issue we're taking really seriously, because no one should have to make a long and often difficult journey just to find a medical expert who can treat them.  It's our aim to develop a network of experts across Europe and eventually, across the world, who can share their knowledge so that more professionals can learn how to help people with limb deficiencies."

    Congenital limb loss is rare and can be caused for many different reasons, including genetic, environmental, chemical such as thalidomide, or through a developmental anomaly such as Amniotic Band Syndrome where the membranes in the womb wrap around limbs and prevent their development.  However a limb deficiency is formed or acquired, the same issues of access to care, adaptations and travel are the same. 

    European Limb Loss Day is held within the UN International Day for Persons with Disabilities and is supported by the Associate Parliamentary Limb Loss Group in the UK, The UK Health Secretary, Jeremy Hunt and the Deputy Prime Minister, Nick Clegg as well as a host of limb loss or deficiency organisations across Europe. 

    Mr Hunt said, "As Secretary of State for Health, I am delighted to give my support to European Limb Loss Day.  As always, it is an excellent opportunity to raise the profile of amputees and those with a limb deficiency.  The fantastic example set at the Paralympics, not just by the truly inspirational performances of our Paralympians but by disabled people playing a vital role in every aspect of the Games has gone a long way towards transforming the perception of disabled people as well as demonstrating the UK's commitment to equality."

    EDRIC Director, Charlotte Fielder MBE, will be attending SportsFest on ELLD at Surrey Sports Park near Guildford on Monday evening where Paralympic Medallists will be inspiring young people with disabilities to try our different Paralympic sports. 

    ENDS

    Editor's Notes

    Awareness day on 3 December 2012, aimed at improving the lives of people living with limb deficiencies

    European Limb Loss Day

    To mark the forthcoming European Limb Loss day on 3 December 2012, a new website and survey have been launched to highlight the issues faced by living with limb loss or deficiency of all types across Europe. 

    The day follows the theme of the International Day for Persons with Disabilities, which is held on the same day, of Removing barriers to create an inclusive and accessible society for all. 

    Limb Differences fall into three general categories: congenital limb deficiency of one or more limbs; acquired limb loss through trauma in war or accident, or through an illness such as cancer, meningitis or diabetes; or those who were born with a condition such as Fibular Hemimelia where the individual has a congenital deficiency and then undergoes an amputation in order to wear a prosthesis. 

    Although the journey is different, the problems faced can be very similar.  For example, the imbalance caused by the loss of a limb puts pressure on other parts of the body to take the added strain of everyday living.  This can lead to back pain or pain in other joints or muscles.  Phantom limb pain and pain from continued use of prosthetics, often ill-fitting, are other common problems. 

    Other issues do not stem from the person themselves, but the from the world at large, such as access to expert medical treatment and suitable prosthetics.  Many also face the wider problem of accessibility issues to public transport, suitable workplaces, financial assistance and adaptations to homes, vehicles and technology to enable as independent a life as possible. 

    We have launched a survey aimed at finding out the state of access to living aids, accessible transport, opportunities and medical expertise for people with limb loss and deficiency across Europe. 

    Limb loss groups across Europe are joining together on European Limb Loss Day to raise awareness of these difficulties with the aim of improving the lives of hundreds of thousands of people across the continent who are prevented from accessing the same opportunities as non-disabled people. 

    Chairman of EDRIC, Geoff Adams-Spink, which has 16 limb deficiency groups across Europe under its umbrella, said, "We are working to show that with some planning, thought and investment, the lives of so many people can be improved immeasurably.  European Limb Loss Day is a great chance to come together with as many limb loss groups as possible to amplify our voices, so that changes can be brought about and at a greater pace.  We'd be delighted if as many people as possible with limb loss could complete the survey to help illustrate a clear picture of how people live with limb loss across Europe."

    Limb deficiency groups, Reach, from the UK, ASSEDEA, from France, Raggiungere and TAI ONLUS from Italy, AVITE from Spain, FfdN from Sweden, HICOHA from Germany, NESOS from Belgium, Contergan Austria and ITSS from Ireland are among those who will be marking the day. 

    In the UK, Trustee of the Limbless Association, John Reid, said, "We're throwing our support behind this awareness day, as we did last year, because in this financial climate it's the most marginalised who bear the brunt.  At the Limbless Association, we're constantly working to raise these issues and so European Limb Loss Day gives us a chance to highlight our work."

    UK charities,The Limbless Association, Limbcare and LimbPower are marking the day by taking part in an event in Chelmsford, Essex, organised by Chelmsford City Council and Anglia Ruskin University, which takes place on 1 December 2012 on the University campus.  The Limbless Association will have an exhibition stand at the event and representatives will be giving presentations.  The event has its own website and details of the various activities and speakers that will form part of the day long event can be found at

    Sam Gallop CBE, Advocate for the Associate Parliamentary Limb Loss Group of which disability rights campaigner Dame Anne Begg and celebrated Paralympian, Dame Tanni Grey-Thompson are also members, said, "Our group is only too aware of the pressing issues people with limb loss are facing, especially as the UK government seeks to reform disability benefits.  We need to use ELLD and the spirit of the Paralympics to show that with the right investment and assistance, lives can be improved.  Often, it's the world we live in that disables people more than their impairments and we want to help change that."

    You can find out more at

    ENDS

    Editor's Notes:

    US Paralympic Skier & keynote speaker, Bonnie St John and Swedish speaker/author, Mikael Anderson confirmed as new EDRIC representatives

    LONDON, 1 November 2012

    Following a hugely successful members' meeting, bringing together 16 different limb deficiency organisations, European non-profit organisation, EDRIC is delighted to announce two new patrons. 

    Keynote speakers, Bonnie St John from the US and Mikael Andersson from Sweden, have joined existing patron, British mouth painter Alison Lapper, in supporting the work of the European limb difference organisation and its recently-launched online arm, DysNet. 

    EDRIC has undergone a rapid expansion of its member base during 2012 and last month, hosted a two day event in Malmö, Sweden, thought to be the largest-ever meeting of charities and support groups representing people with limb differences from across Europe. 

    Bonnie St JohnDespite having her right leg amputated at age five, Bonnie St.  John became the first African-American ever to win Olympic or Paralympic medals in ski racing, taking home a silver and two bronze medals in downhill events at the 1984 Paralympics in Innsbruck, Austria.  The best-selling author of six books, Bonnie travels the world as a highly sought- after keynote speaker.  She is also a television and radio personality, a business owner, and the single mother of a teenage daughter.  NBC Nightly News called Bonnie, "One of the five most inspiring women in America". 

    Bonnie St John said: "I was so happy to be asked to become a patron of EDRIC.  Its work is vital to bring together people with limb loss who may be feeling isolated or unsure of how to access help or opportunities. 

    "This is something so close to my heart.  I'm excited at the prospect of working to raise awareness and inspire others with disabilities to achieve their goals."
    EDRIC's second new patron, Swedish speaker and author, Mikael Andersson, was born without arms or legs but was not deterred from achieving his own dreams. 

    In his role as a motivational speaker, Mikael talks about his own approach to problems and how he overcame his lack of confidence and physical challenges to transform his life.  Mikael believes it is important to learn from both successes and failures, because it gives confidence to move forward.  He says this applies not only to people with disabilities, but to everyone. 

    Mikael AndersonMikael said: "Becoming a patron of EDRIC will give me an opportunity to help more people with limb deficiencies achieve the best they can.  Sometimes we are prevented from gaining success by our mental attitudes rather than our physical limitations and I hope that by being an EDRIC patron, I can help show people just what is possible. 

    "EDRIC has such important goals and I'm looking forward to working with them and their members in the coming years."

    EDRIC's chairman, Geoff Adams-Spink, said: "Our successes this year have far outstripped my expectations, including so many people with limb deficiencies making the journey to come together at our meeting in Sweden.  Now, with the welcome additions of Bonnie and Mikael, we hope to be able to raise the profile of EDRIC and DysNet even further in 2013. 

    "We have so many plans, including building an experts' network and taking part in awareness campaigns and we are really looking forward to working with two such inspirational people."

    The organisation will be supporting European Limb Loss day 2012, which is being held within the International Day of Persons with Disabilities on 3rd December. 

    ENDS

    Editor's Notes

    • EDRIC is the European Dysmelia Reference Information Centre.  It is a Swedish-registered non-profit organisation no.  802444-3015.
    • EDRIC's globally-focused online arm, DysNet, can be found at .  It is on Twitter at @Dysnet_org and Facebook:
    • Bonnie St.  John's publications include How Great Women Lead ISBN: 978-0446579278
    • Bonnie St John's website is at
    • Mikael Andersson's publications include: Armlös, benlös men inte hopplös.  ISBN: 978-9113027579
    • Mikael Andersson's website is at:
    • For more information, please contact Tania Tirraoro at tania.tirraoro [@] dysnet.org Images can be provided on request.

    EDRIC
    LONDON, August 30, 2012: A limb difference organisation founded by European Thalidomide survivors, has offered a cautious welcome to the news that the German manufacturer of the anti-morning sickness drug that caused their serious disabiltities, has for the first time, issued an apology. 

    Pharmaceutical company Gruenenthal has reportedly "asked for forgiveness" from the thousands of children born with missing or shortened limbs and other disabilities after their mothers were prescribed thalidomide, during the 1950s and 1960s. 

    EDRIC, (European Dysmelia Reference Information Centre), which runs the online DysNet Limb Difference Network, says any apology must lead to help for all those who have lived for the last fifty years with physical impairments as a result of thalidomide. 

    Thalidomide was pulled from the market in 1961 after it was linked to birth defects.  Many victims have only recently received compensation. 

    Chief executive Harald Stock said Friday that the company had failed to reach out "from person to person" to the victims and their mothers over the past 50 years. 
    "Instead, we remained silent," Stock said at an event in the western city of Stolberg where Gruenenthal is based. 

    EDRIC Chairman and journalist, Geoff Adams Spink, himself a thalidomide survivor said, "Having tried to remind them of their criminal behaviour across a negotiating table on several occasions, I didn't think this company would ever make things right.  This is important first step.  The next is to compensate everyone damaged by their so-called 'totally harmless' drug."

    The Thalidomide Trust is still seeking a permanent financial settlement for those living in the UK who are experiencing increasing health difficulties caused by their disabilities as they age. 

    Recently in Australia, Thalidomider Lynette Rowe secured a multi-million dollar settlement from Diageo, who distributed the drug in the country and there is a class action in the country brought by several other survivors. 

    Elsewhere in the world, including New Zealand, Ireland and the US as well as across Europe, thousands of others still await financial redress. 
    ENDS

    Editor's Notes. 

    1. To speak to Geoff Adams-Spink, who is also a board member of Disability Rights UK, please email Tania Tirraoro at tania.tirraoro@edric.eu or call (0)7828 140708
    2. The DysNet website can be found at .  Twitter: [LINK:HTTP# Facebook:




    The international limb difference organisation, EDRIC, has appointed its first new board member since it launched its rapidly-expanding online arm, earlier this year. 

    Charlotte Fielder - copyright Gary FielderCharlotte Fielder, MBE, who has worked in the UK civil service for more than 30 years, was herself was born with a shortened forearm and a missing hand.  She has dedicated herself to supporting and fundraising for charities and groups concerned with limb differences. 

    EDRIC (The European Dysmelia Reference Information Centre) is an umbrella organisation that aims to bring together the world's limb difference groups to share knowledge, expertise and support in a way that will benefit and bring a strong voice to those affected by the loss of one or more limbs, whether congenital or through amputation. 

    During her career, Charlotte Fielder has worked with a number of UK Government agencies and represented the UK at international child protection conferences.  She
    is also the author of a book, "Shared Experiences" written for families affected by upper limb deficiencies. 

    Mrs Fielder said, "I am very honoured to be asked to join the board of EDRIC.  It is an impressive organisation with a wealth of knowledge and very important aims.  I am very much looking forward to playing my part in developing its work."

    Earlier this year, the organisation launched DysNet, to use the explosion in social media to create a globally-focused network to spread awareness and link its member organisations together.  Mrs Fielder will take on the role of Online Safety Officer to advise EDRIC and its member organisations how to stay safe online. 

    She said, "In our increasingly connected and 'logged on' world it's important that we, as an organisation that encourages online conversation, are aware of the risks of having an online profile.  I will be responsible for implementing a comprehensive safety policy and a robust scheme of control."

    Chairman of EDRIC, Geoff Adams-Spink, said, "We're delighted to have someone of Charlotte's calibre and background to help us to lead our organisation to greater strengths.  Although EDRIC was founded by a group of thalidomide survivors such as myself, Charlotte's different experience of living with limb loss is our first step towards broadening our representation within the the limb difference community.  We offer her our warmest welcome."

    In 2010, Mrs Fielder was awarded an MBE for exceptional leadership and voluntary work and she hopes her new position will enable her to further her work in the important field of supporting people and families. 

    ENDS

    LONDON 20 August 2012: EDRIC, the European limb difference organisation, is delighted to announce that accomplished British mouth painter, Alison Lapper MBE, has been appointed as its first patron. 

    Alison LapperMs Lapper, who herself lives with significant limb deficiencies (phocomelia), is best known for the statue depicting her nude and pregnant, that was unveiled on the fourth plinth in London's Trafalgar Square. 

    A full member of the British Partnership of Mouth and Foot Painting Artists, Ms Lapper published her autobiography 'My Life in My Hands' in 2005. 

    Earlier this year, EDRIC (European Dysmelia Reference Information Centre) launched its online arm, DysNet, aimed at building an accessible knowledge-base of information, resources and experts' network specifically for people with limb differences, whether acquired or congenital.  DysNet also has a community forum run by EURORDIS, the European rare diseases organisation on its RareConnect network. 

    Ms Lapper said, "I'm really pleased to become a patron of EDRIC.  I wholeheartedly back the EDRIC aim to share the knowledge and expertise that people with limb disabilities have gained as they live independent lives.  Bringing together people and resources in this way can only strengthen our voices."

    EDRIC chairman, Geoff Adams-Spink, said, "Alison is an inspiration to many people who are trying to live as independently as possible.  She shows that you can achieve your ambitions, be creative and become a successful parent - whether you have disabilities or not.  I'm extremely happy to welcome her on board as our first patron."

    Ms Lapper was appointed MBE in 2003 for her services to art. 

    ENDS

    Below is our theme park news release, translated to French.  Please share with your French-speaking connections.  Thanks to Marianne and Anne-Marie at our colleague organisation, Assedea, for the translation. 

    Les parcs d'attraction sont appelés à clarifier leurs conditions d'accessibilité pour les personnes atteintes de malformation des membres


    LONDRES, 12 Juillet 2012: Plusieurs jeunes gens concernés par une malformation de membre ont été récemment exclus de certains manèges lors de leur visite des Parcs Disneyland à Paris.  Les associations européennes concernées par les malformations des membres demandent donc à Disneyland , ainsi qu'aux autres parcs d'attraction, de clarifier leurs conditions d'accès et leurs procédures de sécurité. 

    EDRIC (European Dysmelia Reference Information Centre - Centre Européen d'Information de Référence sur la Dysmélie), qui gère le site Internet Dysnet, traitant des malformations des membres, a été contactée par deux associations : Reach (Grande-Bretagne) et ASSEDEA (France), après que des jeunes atteints de ces handicaps se soient vus refuser l'entrée de certaines attractions au motif qu'il leur manquait une main. 
    Dans l'un des cas une fillette, à qui on a interdit deux fois l'entrée à un manège, a été ensuite autorisée à y aller lorsque ses parents l'ont emmenée voir le service client pour l'enregistrer comme visiteur handicapé. 
    « Nous avons été très choqués, a dit le père, lorsque notre fille de cinq ans, qui est née avec un avant-bras en moins, a été arrêtée par un employé de Disney qui lui a expliqué que c'était parce que « elle n'avait pas deux mains ».  Nous avons élevé notre fille dans l'idée qu'elle n'était pas différente des autres, mais aux yeux de Disney, elle doit être enregistrée comme « handicapée ».  »

    Disneyland Paris a répondu via un communiqué : « La majorité des attractions de nos deux parcs ont été conçues pour être accessibles au plus grand nombre possible de personnes atteintes de handicap ou ayant des besoins particuliers.  Toutefois, la sécurité est la priorité qui prévaut dans toutes les décisions prises par les membres de notre équipe concernant l'accès aux attractions, et cela a certainement été le cas dans la situation que vous décrivez. 
    De plus, nous travaillons chaque jour à faciliter et améliorer les conditions de séjour de nos invités handicapés, et nous sommes actuellement en train de revoir nos procédures d'embarquement et d'accompagnement.  Ces changements prendront bientôt effet.  »

    Le président d'EDRIC, Geoff Adams-Spink, a déclaré : « Les vacances d'été approchent, et des milliers de personnes vont aller dans des parcs d'attraction en Europe et en Amérique du Nord.  Le règlement sur la sécurité et l'accessibilité pour les personnes atteintes de malformation des membres ne semble pas clair, et les gens faisant partie de notre association souhaitent savoir à quoi s'en tenir lorsqu'ils s'apprêtent à dépenser beaucoup d'argent pour aller à Disneyland et dans d'autres parcs.  Si on n'a accès aux attractions qu'après avoir été étiquetté « handicapé », il n'est pasalors question de sécurité : Disney cherche plutôt à se protéger, et ce n'est pas le bon message à envoyer.  »

    M.  Adams-Spink, qui est lui-même né avec deux bras plus courts à cause des effets dun médicament, la thalidomide, a annoncé qu'il comptait contacter Disneyland Paris, afin de programmer une rencontre pour clarifier leur règlement au sujet de l'accès aux attractions pour les personnes atteintes de malformation des membres. 
    « Personne ne souhaite que la sécurité des gens atteints de malformation de membre soit compromise, mais une politique globale qui concerne tous les manèges, ou oblige les personnes à être étiquetées comme handicapés quand ce n'est pas ce qu'elles ressentent, n'est pas acceptable non plus.  Ce n'est pas sorcier d'examiner chaque attraction ou manège et de mettre en place, dans la mesure du possible, les conditions de sécurité nécessaires afin que les personnes à qui il manque des membres inférieurs ou supérieurs puissent profiter de tout ce que Disneyland peut avoir à offrir. 
    EDRIC se déclare serait ravie de travailler avec Disney à mettre au point un règlement d'accès clair pour les personnes atteintes de malformations des membres.  Je serai heureux de développer une politique d'accessibilité qui ne discriminerait pas les personnes de notre association.  »

    1.  Le réseau DysNet a été lancé en Mai 2010 par EDRIC afin de mettre en contact les associations et groupes de patients concernés par les malformations des membres, afin de partager leurs informations et expertise, et ce dans le monde entier. 

    2.  L'adresse web de DysNet est :
    L'adresse web de Reach (Grande Bretagne) est :
    L'adresse web de l'ASSEDEA (France) est :

    3.  Pour obtenir des informations supplémentaires, merci de contacter la responsable de DysNet, Tania Tirraoro, à tania.tirraoro@dysnet.org, ou d'appeler le +447828140708. 

    4.  Disneyland Paris donne des informations sur au sujet de l'accessibilité de ses sites aux personnes handicapées sur ses sites internet :



    Assedea Reach DysNet EDRIC

    Below is our theme park news release, translated to French.  Please share with your French-speaking connections.  Thanks to Marianne and Anne-Marie at our colleague organisation, Assedea, for the translation. 

    LONDRES, 12 Juillet 2012: Plusieurs jeunes gens concernés par une malformation de membre ont été récemment exclus de certains manèges lors de leur visite des Parcs Disneyland à Paris.  Les associations européennes concernées par les malformations des membres demandent donc à Disneyland , ainsi qu'aux autres parcs d'attraction, de clarifier leurs conditions d'accès et leurs procédures de sécurité. 

    EDRIC (European Dysmelia Reference Information Centre - Centre Européen d'Information de Référence sur la Dysmélie), qui gère le site Internet Dysnet, traitant des malformations des membres, a été contactée par deux associations : Reach (Grande-Bretagne) et ASSEDEA (France), après que des jeunes atteints de ces handicaps se soient vus refuser l'entrée de certaines attractions au motif qu'il leur manquait une main. 
    Dans l'un des cas une fillette, à qui on a interdit deux fois l'entrée à un manège, a été ensuite autorisée à y aller lorsque ses parents l'ont emmenée voir le service client pour l'enregistrer comme visiteur handicapé. 
    « Nous avons été très choqués, a dit le père, lorsque notre fille de cinq ans, qui est née avec un avant-bras en moins, a été arrêtée par un employé de Disney qui lui a expliqué que c'était parce que « elle n'avait pas deux mains ».  Nous avons élevé notre fille dans l'idée qu'elle n'était pas différente des autres, mais aux yeux de Disney, elle doit être enregistrée comme « handicapée ».  »

    Disneyland Paris a répondu via un communiqué : « La majorité des attractions de nos deux parcs ont été conçues pour être accessibles au plus grand nombre possible de personnes atteintes de handicap ou ayant des besoins particuliers.  Toutefois, la sécurité est la priorité qui prévaut dans toutes les décisions prises par les membres de notre équipe concernant l'accès aux attractions, et cela a certainement été le cas dans la situation que vous décrivez. 
    De plus, nous travaillons chaque jour à faciliter et améliorer les conditions de séjour de nos invités handicapés, et nous sommes actuellement en train de revoir nos procédures d'embarquement et d'accompagnement.  Ces changements prendront bientôt effet.  »

    Le président d'EDRIC, Geoff Adams-Spink, a déclaré : « Les vacances d'été approchent, et des milliers de personnes vont aller dans des parcs d'attraction en Europe et en Amérique du Nord.  Le règlement sur la sécurité et l'accessibilité pour les personnes atteintes de malformation des membres ne semble pas clair, et les gens faisant partie de notre association souhaitent savoir à quoi s'en tenir lorsqu'ils s'apprêtent à dépenser beaucoup d'argent pour aller à Disneyland et dans d'autres parcs.  Si on n'a accès aux attractions qu'après avoir été étiquetté « handicapé », il n'est pasalors question de sécurité : Disney cherche plutôt à se protéger, et ce n'est pas le bon message à envoyer.  »

    M.  Adams-Spink, qui est lui-même né avec deux bras plus courts à cause des effets dun médicament, la thalidomide, a annoncé qu'il comptait contacter Disneyland Paris, afin de programmer une rencontre pour clarifier leur règlement au sujet de l'accès aux attractions pour les personnes atteintes de malformation des membres. 
    « Personne ne souhaite que la sécurité des gens atteints de malformation de membre soit compromise, mais une politique globale qui concerne tous les manèges, ou oblige les personnes à être étiquetées comme handicapés quand ce n'est pas ce qu'elles ressentent, n'est pas acceptable non plus.  Ce n'est pas sorcier d'examiner chaque attraction ou manège et de mettre en place, dans la mesure du possible, les conditions de sécurité nécessaires afin que les personnes à qui il manque des membres inférieurs ou supérieurs puissent profiter de tout ce que Disneyland peut avoir à offrir. 
    EDRIC se déclare serait ravie de travailler avec Disney à mettre au point un règlement d'accès clair pour les personnes atteintes de malformations des membres.  Je serai heureux de développer une politique d'accessibilité qui ne discriminerait pas les personnes de notre association.  »

    1.  Le réseau DysNet a été lancé en Mai 2010 par EDRIC afin de mettre en contact les associations et groupes de patients concernés par les malformations des membres, afin de partager leurs informations et expertise, et ce dans le monde entier. 

    2.  L'adresse web de DysNet est :
    L'adresse web de Reach (Grande Bretagne) est :
    L'adresse web de l'ASSEDEA (France) est :

    3.  Pour obtenir des informations supplémentaires, merci de contacter la responsable de DysNet, Tania Tirraoro, à tania.tirraoro@dysnet.org, ou d'appeler le +447828140708. 

    4.  Disneyland Paris donne des informations sur au sujet de l'accessibilité de ses sites aux personnes handicapées sur ses sites internet :



    Assedea, DysNet, EDRIC, Reach UK

    A woman from Haywards Heath, disabled by the effects of Thalidomide, has been selected to carry the Olympic torch for Mid Sussex. 

    Lorraine Mercer is one of a small number of people with disabilities to be chosen for the honour and almost certainly the only Thalidomide survivor. 

    Lorraine, who is 51, was born with all four of her limbs shortened after her mother was prescribed the drug during pregnancy.  She was not expected to live. 

    Despite her difficulties and living with constant pain, Lorraine has still been involved in sport, art and charity fundraising.  She has taken part in three one-mile swimathons for the charity, Riding for the Disabled Association, drives carriages in the RDA and has won the RDS silver cup.  Lorraine also has a Blue Peter gold badge for her voluntary work at the Princess Royal Hospital helping people with physical disabilities. 

    Lorraine, who uses a wheelchair, will carry the torch through Crowborough between 12:00 and 14:30 on July 17th 2012 riding in a customised chariot.  It will be day sixty for the Olympic torch's journey around the UK. 

    Lorraine said, "It will be a really proud moment for me to carry the torch.  I'm delighted to have been chosen.  I just hope that the weather is kind as we carry it through Crowborough on the 17th."

    Dr Martin Johnson of the Thalidomide Trust said, "We're really proud that Lorraine has been chosen to carry the torch.  Even though it's now 50 years old, the story of people affected by thalidomide is far from over and we're still campaigning for a permanent financial settlement.  We hope that by taking part, as well as it being a fantastic opportunity for Lorraine, it will keep a light shining on the cause of people affected by thalidomide across the UK."

    Lorraine's torch-bearing will be part of its journey through Mid-Sussex up the A23 from Brighton to Crawley. 

    You can find out more about the Thalidomide Trust at

    28 MAY 2012, LONDON: DysNet, the newly-launched limb difference network, is delighted to announce that its chairman, Geoff Adams-Spink, has been appointed to the board of Disability Rights UK. 
    Mr Adams-Spink leads both DysNet and its European NGO parent EDRIC (European Dysmelia Reference Information Centre). 
    DysNet has been launched to bring together the world's congenital limb difference (Dysmelia) groups and organisations, to share information and resources on a global level.  This week also saw the launch of the DysNet RareConnect community forum under the auspices of EURORDIS and NORD, the world's leading rare diseases organisations. 
    Disability Rights UK, was formed at the start of 2012 through a unification of Disability Alliance, Radar and National Centre for Independent Living.  It aims to be the largest national pan-disability organisation led by disabled people.  Disabled people make up at least three-quarters of its board members. 
    Geoff Adams SpinkMr Adams-Spink is a former BBC disability correspondent and a survivor of the morning sickness drug, Thalidomide.  Women who took the drug for morning sickness while pregnant, gave birth to children with shortened or missing limbs and other disabilities.  Thalidomiders are this year marking the fiftieth anniversary of the withdrawal of the drug. 
    Mr Adams Spink said, "I am delighted to be joining the Disability Rights UK board.  There are many important issues being faced by people with disabilities in the current climate and DRUK has a strong voice to campaign on their behalf.  I believe our work at DysNet for people with limb differences with be enhanced and strengthened by this new link."
    Disability Rights UK focuses on promoting meaningful, independent living for disabled people as well as breaking the link between disability and poverty.  It also campaigns for disability equality and human rights. 
    You can find the Disability Rights UK website at and the DysNet website at

    ENDS
    Editors' Notes:
    1. For more information, please contact DysNet PR, Tania Tirraoro at Tania.tirraoro@dysnet.org or on 07828 140708. 
    2. Geoff Adams-Spink is available for interview.  To access high-res photographs or logos, please get in touch. 
    3. EURORDIS is the European Rare Disease Organisation at , of which EDRIC is a member. 

    Ambitious project for online community founded by Thalidomide survivors, aimed at uniting limb deficiency groups world-wide

    LAUNCH DATE: 21 MAY 2012

    A new online community is being officially launched on Monday May 21st 2012, that aims to connect thousands of families across the globe who are affected by congenital limb differences (Dysmelia). 

    The new website for the DysNet project goes live today, aiming to provide up-to-date information, support and signposting as well as a wealth of hard-to-find research and historical documentation. 

    Individuals around the world will be encouraged to contribute to the online knowledge-base, to share expertise and resources that may benefit others in a similar position. 

    It's the brainchild of a group of Thalidomiders from across Europe, who realise that, although they are approaching fifty years old, there are many, younger people with congenital limb differences in the world with whom they can share their experiences of how to lead independent and fulfilled lives. 

    This year marks the fiftieth anniversary of the Thalidomide generation.  Half a century ago, the thalidomide drug was finally withdrawn from circulation in the face of overwhelming evidence that it caused birth defects, most characteristically, shortened arms and legs. 

    The group, who have formed a pan-European Non-Governmental Organisation called EDRIC (European Dysmelia Reference Information Centre), chaired by Thalidomider and former BBC veteran, Geoff Adams-Spink, are making sure that the knowledge they have gained is preserved and built upon. 

    Geoff said, "There are many small support groups dotted around Europe and the rest of the world of people with various forms of dysmelia.  We want to bring all of their knowledge together so people can find the answers they need and also contribute to the database from their own experiences.  We believe this will improve the lives of people with limb differences everywhere."

    The ambitious project kicked off in April, establishing online presences on social networking sites that are already beginning to flourish.  With the launch of the website (), DysNet will be able to help share its resources globally. 

    Björn Håkansson, Deputy Chairman and Treasurer of EDRIC, said, "Thalidomiders are a very determined group of people and we've solved many problems in our lifetimes.  We want to pass this 'can do' attitude on to future generations of people affected by limb differences.  Now we have the internet and social media, we have the ability to do just that."

    DysNet is also launching an online community on RareConnect, a rare disease community run by EURORDIS, the European Rare Disease organisation and NORD, the National Organisation for Rare Disorders. 

    Online Community Manager at EURORDIS, Rob Pleticha, said, "We're delighted to have DysNet join our RareConnect network.  The new DysNet RareConnect community will offer a trusted, monitored environment for everyone involved with dysmelia, whether personally or professionally, to make connections."

    This will be available to people in the five major EU languages (English, French, German, Italian and Spanish) and should help to connect groups who are currently unable to communicate freely because of language barriers. 

    Ends

    Editor's Notes

    1.  For more information (English) , please contact PR & Community Manager Tania Tirraoro at , Tel: +44 7828 140708 or Chairman, Geoff Adams-Spink at , Tel: +44 7711 898787

    2.  For information in German, contact EDRIC Secretary, Monika Eisenberg-Geginat at , Tel: +49 1728823846

    3.  For more information in Swedish, contact Björn Håkansson, Deputy Chairman and Treasurer of EDRIC at , Tel: +46 705641388

    4.  The DysNet website can be found at ;

    Twitter: ; Facebook: ; LinkedIn: Linkedin

    5.  The RareConnect community can be found at

    6.  DysNet is the online arm of EDRIC, a Swedish registered non-profit organisation.  EDRIC was founded by the UK's Thalidomide Trust and the Swedish Thalidomide Group, FfdN. 


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