News

66 Rare Disease Day news
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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 will be covered to help you prepare for February, from bui...
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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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Today as thousands of events place take place around the world to mark the occasion of Rare Disease Day 2020, we share a sincere message of solidarity with the rare disease community who have cancelle...
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Rare Disease Day is today, 29 February as it is a leap year. The rarest day of the year dedicated to raising awareness for people living with a rare disease. The rare disease community and its support...
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Lubin, aged 12, is from Juvisy, France and is living with spinal muscular atrophy (SMA) which affects 1-9 in 100,000 people. Diagnostic Journey Around the age of one, Lubin’s parents noticed that ...
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