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The rare Diseases Platform - by Thomas Heuyer

The rare Diseases Platform - by Thomas Heuyer, Executive Officer of Platform for Rare Diseases (Plateforme Maladies Rares), Paris, France
Mr Heuyer started by stating that the Rare Diseases Platform is a unique resource centre which brings together over a hundred employees and many volunteers, mobilised to advance the fight against rare diseases and to improve the lives of patients and their families.
He continued by emphasizing the relationship between the six autonomous entities that form the Rare Diseases Platform:
• EURORDIS, European federation which unites more than 560 patient organizations
• The INSERM unit (French Institute of Health and Medical Research) which produces Orphanet, the reference portal for rare diseases and orphan drugs
• The Rare Diseases Foundation that brings together research and healthcare professionals (public, private and voluntary) to promote all areas of research
• The “AFM-Téléthon”, the founding member in 2001 of the Foundation for Rare Diseases and its main funding body through. 60% of the funds raised during the the French Telethon are being used for research on rare disease in France.
• The Rare Diseases Alliance, the French collective of more than 200 patient organizations and the founder of the Rare Disease Day - February 28th
• And last but not least the Rare Diseases Info Services, the French service that provides support and information on rare diseases as well as the creator of a European number on rare diseases.
Thomas Heuyer wished everyone a successful convention and a pleasant stay.