Launch of Rare Diseases International, the Global Voice for Rare Disease Patients

The Rare Diseases International Pre-formation Group

Over 60 patient representatives from 30 countries gathered for the official launch and inaugural meeting of Rare Diseases International (RDI), held at the recent EURORDIS Membership Meeting in Madrid, and to adopt the principles of a Joint Declaration aimed at advocating for rare diseases to be an international public health priority.

RDI represents patients and families of all nationalities across all rare diseases and brings together umbrella patient organisations as well as international rare disease-specific federations from around the world. To date, 20 such groups have formally signed up to be a member of RDI and another 50 are expected to join the initiative before the end of the year.

Yann 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."

Rare Diseases InternationalHe 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."

The main objectives of RDI are:

  • To promote rare diseases as an international public health and research priority by raising public awareness and influencing policy-making;

  • To represent members and people living with a rare disease in international institutions such as the World Health Organisation and the United Nations Economic and Social Council; and

  • To enhance the capacities of members to improve the lives of those living with or affected by a rare disease through information exchange, networking, mutual support and joint actions.

RDI is a EURORDIS initiative, created in partnership with national alliances. The preliminary phase of the initiative has been steered by EURORDIS and national rare disease alliances from the US (NORD), Canada (CORD), Japan (JPA), China (CORD), India (I-ORD), the Ibero-American pan-regional alliance (ALIBER) and the International Federation for Epidermolysis Bullosa (DEBRA International).

The next annual meeting of RDI will take place in May 2016 in Edinburgh alongside the European Conference on Rare Diseases & Orphan Products (ECRD 2016 Edinburgh).

More information on Rare Diseases International.

Photos of the launch on flickr.

Eva Bearryman, Junior Communications Manager, EURORDIS

Page created: 10/06/2015
Page last updated: 10/06/2015
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