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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Looking through both sides of the incubator window
On May 17th ( Also the day of NEC awareness!) 1999 I was born a healthy term+6 baby however I developed NEC soon after birth.… Continue reading Looking through both sides of the incubator window
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I am Smashing Pompe!
Hi everyone, my name is Dwayne; I am 54 years old. I was diagnosed with Late Onset Pompe disease (LOPD) in November 2018 when I… Continue reading I am Smashing Pompe!
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My Rare Disorder Life
I was born on May 25th,1985. Despite a sacral dimple, a diagnosis of “failure to thrive” and a surgery at 2 to reconnect my ureters… Continue reading My Rare Disorder Life
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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
Luca lives with Porifia Eritropoyetica Congenita, a condition which gives a serious aversion to light.
However, his family still describes him as a happy and cheeky boy.
Read Luca's story here: https://cutt.ly/sZnMdwx
Share your own: https://cutt.ly/EPlcuja
James is a man from the UK living with PIK3CA Related Overgrowth Spectrum
While he struggled at school, he found solace in the gym. 🏋️♂️
Read James's story here: https://cutt.ly/uZa8DD4
Share your own: https://cutt.ly/EPlcuja
📢Attention everyone who is living with a rare disease, or is a carer for someone that is- we want to hear from YOU!!!
Contribute to #RareDiseaseDay today by sharing your story- you never know who you might help.
👉 https://cutt.ly/EPlcuja
Avery lives with nonketotic hyperglycinemia or NKH.
This had caused recurring seizures and other problems.
However, since starting a ketogenic diet, Avery has been completely seizure-free.
Read Avery's story here: https://cutt.ly/7LXYfg9
Share your own: https://cutt.ly/EPlcuja
After her birth, the doctor told her mother that Marija wouldn't be able to do much. He was wrong.
She was then diagnosed with Nutcracker Syndrome.
Despite it, she has achieved so much.
Read Marija's story here: https://cutt.ly/7LXORHx
Share your own: https://cutt.ly/EPlcuja