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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A happy story with Crigler Najjar type 1
I was born in Portugal with a rare genetic disorder called Crigler Najjar Syndrome (CNS) type 1, a serious condition affecting the liver. CNS is… Continue reading A happy story with Crigler Najjar type 1
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Plus d’humanité et empathie pour les patients en Cote d’ivoire
Salut tout le monde! Je suis Rose originaire de la Cote d’ivoire. J’ai été diagnostiquée de la myopathie GNE en 2017. C’est une maladie neuromusculaire… Continue reading Plus d’humanité et empathie pour les patients en Cote d’ivoire
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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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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!
Share your storyThousands of events
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Every year, thousands of events are
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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
Vanessa was born in Portugal with a rare genetic disorder called Crigler Najjar Syndrome (CNS) type 1, a serious condition affecting the liver. As a child, she had to travel to England to undergo an auxiliary liver transplant.
Read her story here: https://cutt.ly/SVgNzZj
LIVE TODAY 🔴
How to join international #advocacy efforts to ensure a brighter future for Persons Living With a Rare Disease?
Meet us this afternoon - RDI and @Eurordis Open Academy - to know the main steps➡️ https://bit.ly/3zU0uzP
Rose est originaire de #CotedIvoire. Elle a été diagnostiquée en Inde de la myopathie GNE.
Elle se bat désormais pour que les maladies rares soient reconnues. Pour redonner la dignité aux malades et à leurs familles.
👉https://cutt.ly/bClH5Vt
#RareDiseaseDay #myopathieGNE
Dwayne was diagnosed with Late Onset Pompe disease in his 50s.
He's found support in physiotherapy and discovering the community online along with self-advocacy 📣.
Read Dwayne's story here: https://cutt.ly/1ZYPg5q
Share your own: https://cutt.ly/EPlcuja
Rachel was diagnosed with Tethered Cord Syndrome in college
She fits her doctors appointments around post-grad study and Irish dancing ☘️, which brings her closer to her ancestry.
Read Rachel's story here: https://cutt.ly/xZYPYgt
Share your own: https://cutt.ly/EPlcuja