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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people with rare diseases


events worldwide


countries involved

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

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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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Not Too Rare To Care

Hi, my name is Jayme and I am 26 years old. When I was born in 1996, my Mom along with Doctors knew there was… Continue reading Not Too Rare To Care

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Katie’s Story

I was diagnosed with CMTC when I was 5 months old. At 29 years old, I have lived with markings down the right side of… Continue reading Katie’s Story

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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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