28 Februarywas 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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Even cystic fibrosis and diabetes didn’t stop my dream of becoming a mother, after 6 years we have a healthy son
We have been trying for a baby for six years. First naturally, then with help. We had to interrupt the artificial insemination process twice. The… Continue reading Even cystic fibrosis and diabetes didn’t stop my dream of becoming a mother, after 6 years we have a healthy son
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Our JerguÅ¡ is a creative and fun boy! Why should we convince him he’s sick?
We found out during pregnancy. Jergus dad had a classmate with this diagnosis so he knew it and was not a big tragedy. But parents’… Continue reading Our JerguÅ¡ is a creative and fun boy! Why should we convince him he’s sick?
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The way people see me!
In 2008 when I was leaving one job and going to another I’ll send started having problems with tunnel vision and by the time I… Continue reading The way people see me!
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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
In the run up to Rare Disease Day 2022, we gathered a team of expert speakers from all around the world to tackle an important… Continue reading How to speak to young children about rare diseases
Today, 28 February 2022, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people living with a rare disease around… Continue reading Press Release: Share Your Colours for Rare Disease Day
On 28 February 2022, the rare disease community is coming together for Rare Disease Day to spread hope and solidarity across the world with a… Continue reading Join the Global Chain of Lights!
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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
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 events from
painting to film to arts and crafts across the different continents.
Read the article here: https://cutt.ly/yHSeNI1
Survey now live! Take the new global #RareBarometer Survey on the journey to diagnosis for people living with a rare disease!
👉 Survey available here in 26 languages: http://tiny.cc/survey_diagRD
Jay is a 30 year old diagnosed at birth with an invisible disability known as Congenital Central Hypoventilation Syndrome (CCHS).
Read Jay's story here: https://cutt.ly/DHAK36o
Share your story: https://cutt.ly/EPlcuja
Since its inception in 2008, Rare Disease Day has played a critical part in building a diverse international rare disease community which fights together to achieve common goals.
Read the full story here: https://cutt.ly/OHmU0W5
Charlotte, Matteo and Alessandra are passionate about sport can and believe it can be be a powerful antidote to the struggles that come with a rare disease.
Read the full story here: https://cutt.ly/OHmU0W5