DEF Press Release - EN

Posted on Friday 2nd October, 2015

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Press Release
Strictly embargoed until 00.01 hrs on Friday Oct 9, 2015

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Landmark Conference Will Create International Experts Network for People Affected by Congenital Limb Difference

Stockholm 09/10/15 - Experts in dysmelia will come together in a unique event in Stockholm today with those affected by congenital limb difference to create a network for information sharing and problem solving.

The Dysmelia Experts' Forum Conference - to be held from October 9-11 - is being hosted by EDRIC (European Dysmelia Reference Information Centre), the EX-Center - the world's only centre of expertise for multiple limb disorders - Bräcke diakoni which is one of Sweden's leading non-profit organisations and FfdN (Föreningen för de Neurosedynskadade), the organisation representing thalidomide survivors in Sweden.

The event has been made possible thanks to a generous grant of 600 000 SEK (€65 000) from the Swedish Government.

Experts and those affected by limb difference will come together on equal terms during the three-day event.  It will leave as its legacy a permanent expert network for dysmelia which will encourage further research and field questions from people who are currently unable to access specialist treatment because their conditions are so rare.

EDRIC Chairman, Geoff Adams-Spink said:

"People affected by the variety of conditions that come under the title dysmelia, experience enormous health inequalities.  EDRIC was set up to put this right and the experts' forum is an essential part of the solution."

EDRIC was co-founded by two of the world's leading thalidomide organisations - the UK-based Thalidomide Trust and FfdN.  Both organisations found that there was a lack of specialist medical services needed by thalidomide survivors and that previous attempts to set up networks in a single country had failed.

Björn Håkansson, EDRIC Deputy Chairman and President of FfdN commented:

"We thalidomide survivors are not getting any younger and as we age, our health problems will only increase.  FfdN played a big part in setting up the EX-Center and we now want to share its expertise on a global scale."

Part of EX-Center's mission is to empower existing specialists and clinics to support people affected by limb difference with the most up-to-date information.  EX-Center is backed by the Swedish NGO, Bräcke diakoni.  The organisation's Area Director for Rehab and Disability, Helene Mellström, said:

"We are so proud of EX-Center and look forward to showcasing what it has to offer to so many experts and EDRIC members in Stockholm.  Cross-border healthcare is still in its infancy in the EU, but it is certainly the way forward in terms of treating people with rare conditions."

The consortium behind the DEF conference wants the momentum generated by the event to result in a permanent, vibrant network that will bridge the gap between the needs of those affected by limb difference and the current inadequate levels of support that they experience.


Notes for editors

  • For more information or to arrange interviews in English or French, please contact Geoff Adams-Spink at geoff.adams-spink@edric.eu or call +44 7711898787.
  • For more information or to arrange an interview in Swedish, please contact Björn Håkansson at bjorn.h@ffdn.se or call +46 70564 13 88.
  • For more information or to arrange interviews in Italian, contact Salvatore Giambruno via sal.giambruno@edric.eu or call +39 348 8749160.
  • For more information or to arrange interviews in German, contact Tobias Arndt via tobias.arndt@edric.eu or call +32 483 73 65 19.
  • The EDRIC/DysNet website is at .  Twitter: @DysNet_org.  Facebook: ]
  • For more information about FfdN (Föreningen för de Neurosedynskadade) please visit their website.
  • For more information about Bräcke diakoni please visit their website.
  • For more information about the EX-Center please visit their website.
  • Dysmelia is the medical term for congenital limb deficiency.  It covers a wide range of rare conditions.  It is estimated to occur in between 1 in 50 000 and 1 in 150 000 live births.
  • EDRIC now has 32 member organisations in 20 countries - see the members' page for further details.

Tags: Press Release Limb Difference Dysmelia EDRIC DEF FfdN Bräcke Diakoni EX-Center Rare disease


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