Press Releases

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 www.dysnet.org.  Twitter: @DysNet_org. 
Facebook: www.facebook.com/dysnet
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 www.dysnet.org.  Twitter: @DysNet_org .  Facebook: www.facebook.com/dysnet
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. 

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 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 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."

LONDON, 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 www.dysnet.org.  Facebook: www.facebook.com/dysnet 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."



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 www.dysnet.org The Reach website is at www.reach.org.uk/.  The ASSEDEA website is at www.assedea.org/
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 www.disneylandparis.com/BROCHURE/handicap/uk/catalogue]http://visit.disneylandparis.co.uk/disabled-visitors and www.disneylandparis.com/BROCHURE/handicap/uk/catalogue

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. 

The 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

• The European Limb Loss Day website can be found at www.europeanlimblossday.org
• The EDRIC/ DysNet site can be found at www.dysnet.org
• The Limb Loss Lifestyle Survey can be found at fluidsurveys.com/surveys/edric/elld-survey/
• EDRIC's chairman, Geoff Adams Spink is a thalidomide survivor, and is also a board member of Disability Rights UK
• To speak to Charlotte Fielder MBE or for any other information, please contact Tania Tirraoro, DysNet PR & Community Manager at tania.tirraoro@dysnet.org
• The SportsFest website can be found at www.paralympics.org.uk/sportsfest
• EDRIC is a member of EURORDIS, the European rare Diseases ORganisation and has its own moderated forum on RareConnect, run by EURORDIS at www.rareconnect.org/en/community/dysnet

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



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.  Oscar Pistorius is an example of the latter. 

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. 

The website can be found at www.EuropeanLimbLossDay.org and from there, 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.  The survey can be accessed directly at this link: fluidsurveys.com/surveys/edric/elld-survey/

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 www.idpwd.org

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 www.Europeanlimblossday.org

ENDS

Editor's Notes:

• For more information or to arrange interviews, please contact Tania Tirraoro at tania.tirraoro@edric.eu or call +44 7828 140708
• For a list of participating organisations and their website links, please visit the ELLD website at www.europeanlimblossday.org
• To find out more about the Associate Parliamentary Limb Loss Group, please visit www.apllg.eu
• To directly access the survey, visit: fluidsurveys.com/surveys/edric/elld-survey/

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. 

Despite 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 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 www.dysnet.org.  It is on Twitter at @Dysnet_org and Facebook: www.facebook.com/DysNet. 
• Bonnie St.  John's publications include How Great Women Lead ISBN: 978-0446579278
• Bonnie St John's website is at www.bonniestjohn.com
• Mikael Andersson's publications include: Armlös, benlös men inte hopplös.  ISBN: 978-9113027579
• Mikael Andersson's website is at: www.mikael-unlimited.se
• For more information, please contact Tania Tirraoro at tania.tirraoro [@] dysnet.org Images can be provided on request.

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 www.dysnet.org.  Twitter: [LINK:HTTP#www.twitter.com/dysnet_org]@DysNet_org Facebook: www.facebook.com/DysNet

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, 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. 

Ms 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 : www.dysnet.org
L'adresse web de Reach (Grande Bretagne) est : www.reach.org.uk/
L'adresse web de l'ASSEDEA (France) est : www.assedea.org/

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 :
visit.disneylandparis.co.uk/disabled-visitors
www.disneylandparis.com/BROCHURE/handicap/uk/catalogue

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 : www.dysnet.org
L'adresse web de Reach (Grande Bretagne) est : www.reach.org.uk/
L'adresse web de l'ASSEDEA (France) est : www.assedea.org/

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 :
visit.disneylandparis.co.uk/disabled-visitors
www.disneylandparis.com/BROCHURE/handicap/uk/catalogue

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 www.thalidomidetrust.org

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. 
Mr 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 www.disabilityrightsuk.org and the DysNet website at www.dysnet.org

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 www.eurordis.org, 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 (www.dysnet.org), 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 www.dysnet.org;

Twitter: www.twitter.com/DysNet_org; Facebook: www.facebook.com/DysNet ; LinkedIn: Linkedin

5.  The RareConnect community can be found at www.rareconnect.org/en/community/dysnet

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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