It’s time for Co-Construction !
Rare diseases affect three million French people and thirty million people in all Europe, it’s a major public health issue.
The 9th International Rare Disease Day, will take place on February 29 in over 80 countries around the world. Members of the Platform for Rare Diseases used this opportunity to initiate a Call for a 3rd National Rare Disease Plan.
After two National Plans for Rare Diseases that have been set up in France since 2004, the struggle against rare diseases has made significant progress.
But today, a great number of challenges still remain: equal access to diagnosis and to well matched care on the whole territory, accessible patient and professional information, developing treatments and also industrial issues ... The Platform for Rare diseases reminded that because of the specifics of rare diseases, "only the development of an interdepartmental national strategy supporting all the issues and developing the necessary international interactions, can tighten the initial achievements and bring new answers to benefit the patients. "
The Platform for Rare Diseases therefore asks the French government:
- An immediate commitment to a third National Plan for Rare Diseases. A plan with an actual interdepartmental steering with ensuring a genuine pulse and accurate monitoring.
-The constitution of an ad hoc mission dedicated to the co-construction of the third Plan, which should bring together all the institutional and private stakeholders (patients associations, health professionals, drug manufacturers ...). This mission must have an interdepartmental mandate covering the fields of health, research, social affairs, economy and industry.
A new National Plan for Rare Diseases is an emergency; towards which all energies should be mobilized.
The AFM-Telethon is a member of the rare diseases platform which also brings together: Alliance maladies rares, Fondation maladies rares , Maladies Rares Info Services, Orphanet et Eurordis