The Rare Disease Platform
A unique resource centre
The Rare Disease Platform is a unique resource centre in the world as it brings together on the same site:
- representatives of patient organisations as well as health and research professionals;
- private and public actors;
- employees and volunteers;
- French, European and international stakeholders.
The objectives of the Rare Disease Platform are:
- To promote recognition of rare diseases as a public health priority and to carry the voice of patients.
- To support the creation and activity of all the rare diseases patient organisations through training, information exchange and mutual support.
- To develop knowledge and information services for all audiences.
- To support and strengthen research on rare diseases, which is essential for the development of treatments.
- To offer meeting and work spaces for all stakeholders involved in the fight against rare diseases. / For any request for a booking, please use this form.
Six autonomous entities form the platform:
- The “Alliance Maladies Rares”, the French collective of more than 200 patient organisations.
- The “AFM-Téléthon”, founder of the Platform in 2001 and its main funding body through donations to the French Telethon.
- EURORDIS, European federation which unites more than 500 patient organisations.
- The “Fondation maladies rares” that brings together research and healthcare professionals (public, private and voluntary) to promote all areas of research for the benefit of patients.
- "Maladies Rares Info Services", the French service that provides support and information on rare diseases.
- The INSERM unit (French Institute of Health and Medical Research) which produces Orphanet, the reference portal for rare diseases and orphan drugs, and hosts the scientific secretariat of the European Union Committee of Experts on Rare Diseases (EUCERD).