The first annual meeting of RDI took place in May 28, 2015 in Madrid, Spain, alongside the EURORDIS Membership Meeting.
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.
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.”
Presentations
- Rare Diseases International – Paloma Tejada – EURORDIS
- Joint Declaration “Rare Diseases as an International Public Health Priority” – Flaminia Macchia – EURORDIS
- WHO Support for Rare Diseases – Durhane Wong-Rieger – International Alliance of Patients Organizations
- Advocating the WHO: IPOPI’S experience – Johan Prevot – IPOPI
- Committee for Rare Diseases within the UN – CfRD – Anders Olauson, Agrenska Foundation
- Fostering patient involvement in international research – Sharon F. Terry, Genetic Alliance
- Defining relations between ICORD and Rare Diseases International – Manuel Posada – ICORD