May
17

Global self-help network launched to support people with limb differences

Posted on Thursday 17th May, 2012

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  Half a century ago, the thalidomide drug was finally withdrawn from circulation in the face of overwhelming evidence that it caused birth defects, most characteristically, shortened arms and legs.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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Tags: DysNet EDRIC dysmelia limb difference EURORDIS rare diseases News Press Release

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