News

57 Rare Disease Day news
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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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Kin Ping  is living with retinitis pigmentosa. He was diagnosed as a teen after 10 years of visiting dozens of ophthalmologists. Retinitis pigmentosa symptoms include difficulty seeing at night and th...
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Download the official Rare Disease Day 2020 poster to display at your events, workplace or home and to share the message that Rare is many worldwide, rare is strong every day, rare is proud everywhere...
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Gauthier, aged 4, and his mother Eloise feature on the Rare Disease Day 2020 official poster. He is from Charleroi, Belgium and lives with the rare disease sickle cell anaemia, which affects 1-5 in 10...
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The countdown has begun for the 13th edition of Rare Disease Day! Rare Disease Day will take place on 29 of February 2020, the rarest day of the year. The campaign is open to everyone to get involved ...
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Rare Disease Day 2020 is on Saturday 29 February - a very rare day as it is a leap year. This year our message is that ‘Rare is many, rare is strong and rare is proud!’Rare Disease Day is entering a n...
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We have come a long way from the first Rare Disease Day which took place over a decade ago in 2008 when 18 countries took part. This year, Rare Disease Day was celebrated by patient groups, policy-mak...
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Today on Rare Disease Day 2019 the worldwide rare disease community is joining together to raise awareness of rare diseases by holding events, conferences and fundraisers. Thousands of Rare Disease Da...
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Rare Disease Day 2019 puts rare disease patient stories in the spotlight. This year’s campaign brings together three testimonial videos that tell the stories of Filip, Karlo and Lorena and their exper...
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Watch the #ShowYourRare 2019 video to get inspired to paint your face and Show Your Rare during the month of February for Rare Disease Day 2019.It’s simple to take part! Paint your face using br...
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