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


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

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Kathryn gets Answers

After years and years wondering if there was a genetic condition that was behind why Kathryn was unique – right before her 16th birthday we… Continue reading Kathryn gets Answers

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Irene 9p22

Durante el embarazo no sospechamos que Irene vendría con una enfermedad rara hasta el día de su nacimiento, los médicos nos comentaron que sus rasgos… Continue reading Irene 9p22

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My Story My Journey (قصتي رحلتي)

Hello 👋 My name is Omaima but you can call me om , I’m from Kuwait city 🥰🇰🇼 Have arteriovenous malformation (avm ) left leg… Continue reading My Story My Journey (قصتي رحلتي)

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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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