To Malmo we go for the EDRIC Limb Difference Membership Meeting
On Thursday, more than 40 people from 20 different organisations will begin to gather at a hotel in Malmo, Sweden for the first ever EDRIC members' meeting.
Earlier this year, DysNet's parent umbrella organisation, EDRIC (European Dysmelia Reference Information Centre), began recruiting charities and support groups that help people and their families who live with limb differences. We have been overwhelmed by the enthusiasm of people from across Europe to join together and share experiences, information and resources.
EDRIC's unofficial motto is "Together we are stronger". In practice this means that the voice of the global limb difference community is amplified and our knowledge of best practice and our influence at a strategic level, is increased. We are still recruiting, globally, so if you are part of a support group or charity or other organisation that helps people with limb difference, whether congenital or acquired, please get in touch.
Our meeting in Malmo will include presentations about managing the health of a rare disease community, our DysNet RareConnect forum and how to get involved in it, and a social media workshop aimed at enabling our members to prepare their own social media strategy so that they can harness the internet for the good of their members.
It's a very exciting time for us and a great time to join to help make your voice heard. Our current members, prospective members and related organisations joining us in Sweden are:
EURORDIS (European Rare Diseases Organisation), FfdN (Sweden), Thalidomide Trust (UK) Thalidomide Society (UK), Reach (UK), Raggiungere (Italy), ASSEDEA (France), Contergan-NRW (Germany), DNTF (Norway), AVBS (Belgium), TAI Onlus (Italy), ITSS (Ireland), NRW (Germany), NESOS (Netherlands), Contergan Austria (Austria), TAR Syndrome SUpport Group (UK), AVITE (Spain)
If you're not on this list but would like to join EDRIC, what are you waiting for?
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