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


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

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Mi búsqueda y lucha por un diagnóstico

Un cúmulo de despropósitos. Los médicos siguen diciendo que sólo tienen una sospecha y que no hay derecho a un diagnóstico, y no lo puedo… Continue reading Mi búsqueda y lucha por un diagnóstico

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Keep Searching for Answers

It took us 14 years to get a correct diagnosis. I first had signs that something troublesome was going on in 2004. I was passed… Continue reading Keep Searching for Answers

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Mijn leven als eendje

Het syndroom van Camurati Engelmann is een zeldzame, genetische ziekte die gekenmerkt wordt door hyperostose van de lange beenderen, schedel, wervelkolom en het bekken en… Continue reading Mijn leven als eendje

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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

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

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

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