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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people with rare diseases
600+
events worldwide
106
countries involved
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Read our stories
The Stranger that lives between my Bones
She did not have a name for the longest time; all I knew was that she brought a pain I never knew existed. She would… Continue reading The Stranger that lives between my Bones
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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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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