Rare Diseases International launched at inaugural members’ meeting

The first annual meeting of RDI took place in May 28, 2015 in Madrid, Spain, alongside the EURORDIS Membership Meeting.

Rare Diseases International Membership Meeting Madrid 2015

Over 60 patient representatives from 30 countries gathered for the official launch and inaugural meeting and to adopt the principles of a Joint Declaration aimed at advocating for rare diseases to be an international public health priority.

The Rare Diseases International Pre-formation GroupYann Le Cam, EURORDIS Chief Executive Officer, said at the launch, “The foundation of RDI is a historic moment, turning the rare disease patient movement into an international one. By coming together we are creating a critical mass that cannot be ignored. Joining together makes each of us stronger locally and together globally.”

He emphasised that globalisation is not a challenge for the rare disease community but part of the solution, commenting, “The complexity of the rare disease community can be united through RDI. Rare diseases are currently ignored on the international agenda. There is a long way to go, but we must look at our diversity as a strength, not a problem.”

Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD) added, “CORD has benefitted tremendously from its EURORDIS membership and RDI will be an even greater resource, especially for patient groups in countries that are just developing rare disease policies, by allowing them to draw upon best practices, support and a global patient voice.”

Peter L. Saltonstall, President and CEO of the US National Organization for Rare Disorders (NORD), said, “NORD is pleased to join Rare Diseases International and to collaborate with leading patient advocacy groups from around the world to help make rare diseases an important global public health priority.”

Photos of the launch on flickr

Presentations



 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.European Conference on Rare Diseases An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases