28 Februaryis 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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21
days
to go

300M

people with rare diseases

600+

events worldwide

106

countries involved

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Join the community. Help us build awareness. Share your photos, videos and experiences!

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We tend to take our eyes for granted until they go wrong.

After experiencing issues with my peripheral vision and sensitivity to light I had multiple tests and scans leading to my diagnosis of Acute Zonal Occult… Continue reading We tend to take our eyes for granted until they go wrong.

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We thought it was just MS?

I was diagnosed with Neuromyelitis Optica 03/12/2019. It’s been one crazy journey. I remember going to the GP, hardly being able to walk & trying… Continue reading We thought it was just MS?

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Journey to where I am Today

I was between early 20’s when, I was told that they had found a match something that was rather unspexpected , because the DD study… Continue reading Journey to where I am Today

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What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

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Thousands of events
in over 100countries

Every year, thousands of events are
organised across the world.

In the news

20 November was the launch of the official #RareDiseaseDay 2023 video in over 40 languages! This 20-second video kicks off the international patient-led campaign and… Continue reading Official 2023 Global Video Launch

On 25 November at 2 PM (CET), the Rare Disease Day team is hosting a download materials webinar for your Rare Disease Day campaign! This… Continue reading Register for the #RareDiseaseDay Download Materials Webinar!

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

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