Rare Disease Day in France
France has taken part in Rare Disease Day since its debut in 2008. Key events have included public gatherings in Paris, a book of rare disease patient stories, and the annual awareness raising campaign aboard national trains. There have also been educational programs launced in French public schools and smaller, regional events. In 2016, events were held in 28 cities across France. This year in Seynod there was a ‘Chocolate Weekend’ where people could taste samples from local producers in aid of rare diseases. There were also a number of conferences on shaping rare disease policy in France and beyond.
The Alliance Maladies Rares, the French National Alliance, was created in 2000, today bringing together 202 patient organisations and representing nearly 2 million patients suffering from 2000 rare diseases. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
There is a rare disease helpline available in France, the Maladies Rares Info Service, which you can contact with any questions on +33 1 56 53 81 36.
France is a world leader in its policies for rare diseases. France is currently on its second national plan, ensuring quicker diagnosis of rare diseases and greater access to care.
You can also get involved! Do you know of any events not listed here? Email us at firstname.lastname@example.org.