News

69 Rare Disease Day news
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The rare disease community and its supporters come together to share the message: Rare is many. Rare is strong. Rare is proud!Today, 28 February, is Rare Disease Day; the day dedicated to raising awar...
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The official Rare Disease Day 2021 video launches today and is already available in 36 languages, kicking off the international patient-led movement that puts rare diseases in the spotlight.6 continen...
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For Charlotte from the UK, who has a rare genetic disorder called Osteogenesis imperfecta, sport has been a really important part of her coping mechanism. Her condition means her bones are brittle, pu...
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6 continents, 6 portraits, 6 heroes, 6 lives. Rare Disease Day shines a light on the global and diverse community of over 300 million people - men, women and children, adolescents, young-adults, adult...
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If you have a rare disease, the search for a diagnosis can often feel like the longest detective investigation -  with no clues, lots of blind alleys and, occasionally, disbelieving authorities. It ma...
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We are excited to announce our Rare Disease Day webinar series, which started on Wednesday 21st October. In these webinars, a range of topics are covered to help you prepare for February, from buildin...
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For some, the day we learned of our rare disease diagnosis is a happy day. Odd, isn’t it?Imagine having your closest friends and family thinking that you are overreacting a bit, or that you are search...
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Art events are powerful tools to raise awareness for people living with a rare disease. This year Rare Disease Day saw a wide variety of art events around the world engaging all members of the communi...
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A real highlight from Rare Disease Day this year was seeing the spectacular sight of buildings and monuments lighting up to raise awareness. From well-known landmarks such as the Colosseum and the wor...
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Saturday 29 February was the 13th edition of Rare Disease Day. The campaign continues to grow each year since it was first launched in 2008. Thousands of events were organised over 100 countries and r...
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