The Voice of Rare Disease
Patients in Europe
Making rare diseases an international health priority
The annual meeting of Rare Diseases International(RDI), the global alliance of people living with a rare disease of all nationalities across all rare diseases, recently took place in Edinburgh alongside the European Conference on Rare Diseases & Orphan Products (ECRD 2016).
At only the second annual RDI meeting following the launch meeting in May 2015, over 80 participantsfocused on: progress in RDI activity made so far; how to advocate for rare diseases to become an international public health priority; how international rare disease stakeholders can join forces to do this and also next steps and strategic priorities for RDI.
Yann Le Cam, Chief Executive Officer of EURORDIS and member of the recently elected RDI Council, presented a draft action plan for the next 3 years, which is open for consultation via the RareConnect RDI Discussion Group.
Learn more about the vision, mission and objectives of RDI.
The 36 members of RDI include rare disease national alliances from 23 countries, 6 disease-specific international federations and 3 regional networks. Find out more about becoming an RDI member organisation. The current aim is to double this membership by 2018.
Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders and member of the RDI Council, spoke at the meeting, "There has been great improvement over the last two decades, now when you mention rare diseases people know what you are talking about. Now our role is to ensure rare diseases are explicitly recognised as part of universal health coverage. RDI will create tremendous opportunities in the near future. Right now we all need to work together; we need to take a leap of faith to make RDI a success, to bring together the global rare disease community and to ensure rare diseases are recognised as a public health priority."
She also spoke of the difference between rare disease communities and actions in developed and developing countries, "Not everybody is moving at same pace – we need to move as a global rare disease community to prevent widening this gap."
To work towards bridging this gap and towards making rare diseases an international public health priority, the joint declaration Rare Diseases: An International Public Health Priority was adopted in May 2015 and also presented at the meeting in Edinburgh. Anders Olauson, Founder and Chairman of the AGRENSKA Foundation, also introduced the new NGO Committee for Rare Diseases, in which RDI will represent people living with a rare disease. The inaugural meeting for this Committee, which was established under the umbrella of the Conference of NGOs with Consultative Status to the United Nations Economic and Social Council (CoNGO), will take place in November 2016.
The RDI meeting in Edinburgh also included presentations from Alain Baumann of the World Federation of Hemophilia, who shared their model on sustainable national care programs in developing countries; John Forman, the President of the International Conference on Rare Diseases and Orphan Drugs (ICORD), with which RDI is collaborating on international conference activity; Emmanuel Chantelot, Chair of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) Rare Disease working group; and Dr Iiro Eerola, who presented the International Rare Diseases Research Consortium.
Following the RDI meeting, several sessions at the ECRD 2016 also focused on rare diseases in the international context, presentations from which will be available soon. The RDI ECRD 2016 poster is available here.
Questions about RDI? Contact Paloma Tejada, RDI Senior Manager: Paloma.email@example.com or visitwww.rarediseasesinternational.org for more info. You can also sign up to be added to the RDI mailing list, follow @rarediseasesint and join the RDI RareConnect Discussion Group.
Eva Bearryman, Junior Communications Manager, EURORDIS