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Zeldzame Ziektendag

Show your rare. Show you care

This year’s video features patients and family members, researchers and doctors who show their rare. The video shows the wide range of people involved in the rare disease cause and together, with your support they can be a strong voice for greater progress in research of rare diseases.

Read stories of the stars of the video – 5-year-old Enzo, who is living with congenital myasthenic syndrome, Yara, a rare disease researcher, Annie, who is living with leber hereditary optic neuropathy, Alexandre, who is living with Fibrodysplasia ossificans progressiva, and his father Antoine. Thank you also to Zoé, who lives with Congenital myasthenic syndrome, Sylvain a doctor who has experience with diagnosis of rare diseases and Mirina who is living with Ehler-Danlos… biographies coming soon!

Share this video on social media and with your friends and family to help show your solidarity with those living with rare disease and spread the word about Rare Disease Day, 28 February 2018!