29 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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2
days
to go

300M

people with rare diseases

600+

events worldwide

106

countries involved

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How A Rare Neuromuscular Disease Saved My Life

Strange Symptoms My jaw literally dropped. Chewing, speaking, and swallowing led to severe bulbar exhaustion, and the inability to move my jaw. The symptoms progressed… Continue reading How A Rare Neuromuscular Disease Saved My Life

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Celebrating Life and Spreading Awareness in Cancer Survivorship

When I was 21 years old, I found out I was pregnant. I didn’t know that the pregnancy would be the only surprise that year,… Continue reading Celebrating Life and Spreading Awareness in Cancer Survivorship

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Turning Pain Into Purpose With Rare Disease Girl

After giving birth to my baby, I triggered an idiopathic rare disease called Atypical Hemolytic Uremic Syndrome. It caused a cascade of life-threatening issues including… Continue reading Turning Pain Into Purpose With Rare Disease Girl

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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 February 8 at 2PM (CET) the Rare Disease Day team is hosting a webinar on “Driving Awareness by amplifying young voices in the rare… Continue reading Learn to engage your young community

With 100 days to go, the countdown to Rare Disease Day 2024 begins today. This isn’t just a date on the calendar; it’s the start… Continue reading Join the Countdown: Rare Disease Day 2024 Starts Now

In the run up to Rare Disease Day 2023 on 31 January at 5.30 CET, we hosted a webinar with guest speakers and medical experts… Continue reading Webinar: How to Raise Awareness Among Healthcare Providers