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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31
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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Emily our Strong warrior

Emily was diagnosed with Nephrotic Syndrome and global developmental delay followed by genetic testing she was then diagnosed with TRIM8 related disorder. She has presented… Continue reading Emily our Strong warrior

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Amanda’s Angioedema Story

Hi, my name is Amanda and I live in England, UK. I’m 34 years old and 14 years ago, I first went into Anaphylaxis at… Continue reading Amanda’s Angioedema Story

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Siempre puedo volar

Soy Mauel, nací de 36 semanas de gestación. A los dos meses de vida mis papás se dieron cuenta que algo no andaba bien, era… Continue reading Siempre puedo volar

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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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