The video features patients and family members, researchers and doctors who show their rare.
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 the other stars of the video: Zoé, who is living with Congenital myasthenic syndrome, Sylvain a doctor who has treated patients with rare diseases and Mirina who is living with Ehler-Danlos… biographies coming soon!
Join them and show your support for the rare disease community – #ShowYourRare during the month of February on social media. Simply post an image or selfie on any social media channel with your face painted and include the hashtags #ShowYourRare, #MyRare or #RareDiseaseDay. With your help, we can raise awareness and increase support for research, the theme for 2018.
The fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases.
To help change this, patient involvement in research needs to be taken to the next level.
Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.
All those involved in the rare disease cause, doctors, parents, patients and researchers unite in this video showing that when joined together the rare disease voice is stronger than ever! Share the video on Facebook and Twitter to become part of the international campaign!
Rare needs research. Rare needs you.