News

40 Rare Disease Day news
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Launched in 2018, #ShowYourRare is the interactive social media campaign for Rare Disease Day.Anyone around the world can get involved by painting their face and sharing a selfie on social media using...
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Today is Rare Disease Day 2018! With events happening in over 90 countries and regions across the world, together we can raise awareness to help further the rare disease cause. 5 new countries are ...
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Mirina stars in the Rare Disease Day 2018 official video and is living with Ehlers-Danlos syndrome. She was diagnosed at the age of 4 and has been living with the rare connective tissue disease from b...
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EURORDIS is very pleased to announce that Sean Hepburn Ferrer, the eldest son of the late actress and humanitarian, Audrey Hepburn, is Rare Disease Day 2018 Ambassador. Sean Hepburn Ferrer was the pre...
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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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