Rare Connect is an online social network managed by communities of patients with rare diseases created in 2010 alongside EURORDIS
, the European Network of Rare Diseases, and the National Organization for Rare Disorders (NORD).
Nominations for the EURORDIS
Scientific Award came from the public, with members of the rare disease community and beyond then having their say on who should get the top accolade.
launched Rare Disease Day in Europe in 2008.
The European Medicines Agency recommended 18 orphan drugs in 2015 -- but just four in 2011 -- and EURORDIS
is urging more to be done about finding treatments for rare diseases.
RareConnect was created by EURORDIS
(European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
According to EURORDIS
, approximately 80% of rare diseases have a genetic origin.
Chief Executive Officer Yann Le Cam said, “RareConnect brings together rare disease patients in a collaborative way, across borders.
We urge all stakeholders to reach across borders and find common solutions to living with serious, chronic and life-threatening rare diseases," said Yann Le Cam, Chief Executive Officer, EURORDIS
M2 EQUITYBITES-February 28, 2013-Genzyme is recipient of EURORDIS
Company Award in the field of rare diseases(C)2013 M2 COMMUNICATIONS http://www.
M2 PHARMA-February 28, 2013-Genzyme is recipient of EURORDIS
Company Award in the field of rare diseases(C)2013 M2 COMMUNICATIONS
also stressed the vital need to raise public awareness about the specific problems encountered by these sufferers and their families and friends, and to seek suitable funding for fundamental research.
EDRIC is a member of EURORDIS
, the European rare Diseases ORganisation and has its own moderated forum on RareConnect, run by EURORDIS