DysNet, a new online network designed to connect thousands of families worldwide affected by congenital limb differences, recently celebrated its official launch. The site reportedly provides a platform for users to access up-to-date information, support, signposting, and a wealth of research and historical documentation. The site also aims to encourage users worldwide to contribute by sharing expertise and resources that may benefits others in a similar position as them.
The release reports that the site’s conception stems from a group of Thalidomiders who have formed a pan-European non-governmental organization called European Dysmelia Reference Information Center (EDRIC). The organization is chaired by Geoff Adams-Spink, Thalidomider and former BBC veteran.
“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,” Adams-Spink says.
Björn Håkansson, EDRIC deputy chairman and treasurer, adds, “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 also notes that it will be launching an additional online community on RareConnect, a rare disease community managed by EURORDIS, the European Rare Disease organization and the National Organization for Rare Disorders (NORD). EURORDIS online community manager, Rob Pleticha voices the organizations delight in integrating DysNet into the RareConnect network. Pleticha adds that the new DysNet RareConnect community will have the ability to provide users involved with dysmelia a trusted, monitored environment to make personal or professional connections.
According to the release, the site will be available to users in 5 major EU languages (English, French, German, Italian, and Spanish) with the goal of connecting groups who are currently unable to communicate because of language barriers.
For more information, visit http://www.dysnet.org