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.
Share your colours Download materialsThousands
events worldwide
300M
people with rare diseases
106
countries involved
Share your colours
Join the community. Help us build awareness. Share your photos, videos and experiences!
Meet our heroes
Read their stories
Become our friend
Sign up your organisation
Find an event near you
Join the campaign
Download materials
Share your colours
Read our stories
Siempre había estado ahí
Lo que no había cambiado en ella era su esperanza; aquella que hoy hacía su aparición y la que se esfumaba en cuanto decían su… Continue reading Siempre había estado ahí
Read full story
Sia Strong
In 2019 our daughter was diagnosed with epilepsy. We noticed a decline in abilities and trouble with walking so we had further testing done. An… Continue reading Sia Strong
Read full story
Shiloh
Shiloh was born on June 18,2019. He has been diagnosed with around 40 conditions since then and is currently participating in the Undiagnosed Diseases Network… Continue reading Shiloh
Read full storyWhat's your story?
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
CONNECTING THE WORLDWIDE RARE DISEASE COMMUNITY WITH 100 DAYS TO RARE DISEASE DAY 20 November 2021, Paris Today marks the launch of the global awareness… Continue reading Press Release: 100 Days to Rare Disease Day 2022
The rare disease community and its supporters come together to share the message: Rare is many. Rare is strong. Rare is proud! Today, 28 February,… Continue reading Many, Strong, Proud: Connecting Rare Disease Day Across Continents
The official Rare Disease Day 2021 video launches today and is already available in 36 languages, kicking off the international patient-led movement that puts rare diseases… Continue reading Out Now! Rare Disease Day 2021 video is here!
Social feed
Rare Disease Day Follow 1,910 37,785
28 February 2022 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
More than 70% of people with a rare disease consider that they have difficulty with daily activities and that their disease impacts their motor and sensorial functioning.
This is why we as a rare disease community are joining the call for disability inclusion.
#rarebarometer
Sofia lives with epilepsy & leukodystrophy.
Her family started a charity to raise funds for research on these rare diseases. Sofia's story sparked many fundraisers and inspired further efforts for inclusion in the rare disease community.
Read her story: https://cutt.ly/GT468Xr
At 5 years old, Zixuan was diagnosed with Mucopolysaccharidosis type I.
Given enough resources, it is possible to detect Mucopolysaccharidosis type I at birth or even during pregnancy, yet Zixuan’s family had to wait until she was 5.
Read Zixuan's story: https://cutt.ly/kT97Tcx
This year, we are thrilled to announce that we are extending the global chain of lights and inviting everyone to #lightupforrare in their homes at 7pm on 28 February 2022.
Find out more about the project: https://cutt.ly/kT3qcl0
Do you want to start a conversation about rare diseases with children?
A Friendship Story tells the story of a young boy who overcomes the challenges of his rare disease.
Available in in 20 different languages for free at: https://cutt.ly/4TS2e7E
#rarediseaseday