28 February is Rare Disease Day

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

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My Tribe

With her first scary seizure at 3 days old, and some pretty routine testing like MRIs, CT scans, EEGs, some genetic testing (Rett, Fragile X),… Continue reading My Tribe

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Patient becomes Scientist and develops nonprofit

I was diagnosed when I was 17 years old with tenosynovial giant cell tumor (TGCT), a rare locally aggressive tumor that occupies the synovium, tendon… Continue reading Patient becomes Scientist and develops nonprofit

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The ability to reinvent yourself is the greatest skill of a human being!

I was born with XLH – X-Linked Hypophosphatemia, I’m 36 years old and I’ve had 12 leg surgeries and relearned to walk 18 times. I… Continue reading The ability to reinvent yourself is the greatest skill of a human being!

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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

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Thousands of events
in over 100countries

Every year, thousands of events are
organised across the world.

In the news

Meet Vasco, Jelena, Wafic, Nada, Tshepiso, and Taka: our Rare Disease Day 2022 superheroes! Although they live with different diseases, come from different countries, and… Continue reading MEET OUR 2022 SUPERHEROES

We are thrilled to announce the return of the Rare Disease Day capacity-building webinar series, following last year’s huge success. In this year’s webinar series,… Continue reading Rare Disease Day Webinar Series Returns for 2022

A global grassroots campaign led by people living with a rare disease and their families has successfully secured the adoption of the first-ever UN Resolution… Continue reading Resolution for People Living with a Rare Disease adopted by the United Nations

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