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!
Share your storyThousands 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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28 February 2022 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
The spectrum of rare diseases is diverse, and symptoms vary from disease to disease.
But the rare disease community is united by a common goal: to fight for equity for everyone living with a rare disease all around the world.
Find out more: https://cutt.ly/aIOHvB3
The fight of #RareDiseaseDay for equity means:
✔️ social opportunity,
🏫 non-discrimination in education and work, and
🏥 equitable access to health, social care, diagnosis and treatment
for people living with a rare disease.
Learn more in our toolkit 👉http://cutt.ly/wIWqdSV
With the support of her family as well as @FEMEXER it took 9 years ⏱️ to diagnose Nitzia's Turner syndrome.
She now has access to the right treatment and enjoys her life by helping others!
Read Nitzia's story: http://cutt.ly/gIbdwfE
#RareDiseaseDay
Join the global chain of lights and light up a monument in your city for Rare Disease Day 2022! ✨
Help us spread the word and raise awareness for rare diseases.
➡️ Learn how to illuminate a building in your city: https://cutt.ly/4UqHCuy
Regina is a patient advocate in Brazil living with Leiomyosarcoma, a rare cancer.
She is inspired every day by the love and positivity of her family and friends.
Read Regina's story in Portuguese: https://cutt.ly/2U6WrbH
Share your own: https://cutt.ly/xU6WoY3