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Alliance Maladies Rares
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France

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 and in cinemas. There have also been educational programs launched in French public schools and smaller, regional events. Conferences on rare diseases inform the public of ongoing struggles; and information stands run by the National Alliance Maladies Rares have helped to raise awareness in shopping centres, hospitals and churches. 

People celebrated Rare Disease Day 2018 by painting their faces for the #ShowYourRare campaign. Another highlight of 2018 was the publishing of a comic book on how to constructively deal with outside curiosity as a rare disease patient. In addition, Rare Disease Day was marked with a concert and a Ciné-Débat on the film Wonder, which follows the story of a boy living with a rare disease. An activity day allowed people to participate in adaptive sports to increase awareness and understanding. France is a world leader in its policies for rare diseases.

You can also get involved! Do you know of any events not listed here? Email us at [email protected].

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