News

66 Rare Disease Day news
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The official Rare Disease Day 2018 video launches today and is already available in 24 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight.The video ...
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Father and son Antoine and Alexandre both appear in the official Rare Disease Day 2018 video. Alexandre lives with fibrodysplasia ossificans progressiva, a very rare connective tissue disease. As is o...
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Annie developed Leber hereditary optic neuropathy (LHON) at an adult age, when she was 44 years old. LHON affects fewer than 1 in 15 000 people and causes a degeneration of the central vision of the p...
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Enzo is the youngest star of this year’s Rare Disease Day video and has just turned 5. He lives with Congenital Myasthenic syndrome, a neuromuscular disease, which affects the strength of his muscles....
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With under 50 days to go, Rare Disease Day preparations are fully underway and we are one step closer with the release of the official poster for 2018, available to download today!The poster is the fi...
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Yara is a currently a researcher specialising in rare diseases and one of the stars for the Rare Disease Day 2018 video. She first witnessed the effects of rare diseases while working as a pharmacist....
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Only 100 Days to Rare Disease Day 2018 Preparations have already begun for the 11th edition of Rare Disease Day! Rare Disease Day 2018, which will take place on 28 February, will see thousands of peo...
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There is so much to be said in the fight to increase rare disease research that the theme for Rare Disease Day 2018 is research, continuing on from Rare Disease Day 2017!Rare disease research contribu...
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Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases!  With the theme of research, and...
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The Rare Disease Day 2017 official video is OUT NOW! Share this video on social media and with your friends and family to help spread the word about Rare Disease Day, 28 February 2017! Together we ca...