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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Vincent’s Story

In 2016 my son Vincent was born. Weeks after he was born he started experiencing symptoms of sweating, shaking, paleness and blueness in the lips… Continue reading Vincent’s Story

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Friends that Care are Rare

“Not Too Rare to Care” Did you know that millions of people are diagnosed with rare diseases and unknown disorders everyday, especially women? According to… Continue reading Friends that Care are Rare

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Living with Batten Disease: Anthony’s Story

Meet my son Anthony, he was diagnosed with Neuronal Ceroid Lipofuscinosis Type 7, also known as Batten Disease. Batten Disease is a rare, terminal genetic… Continue reading Living with Batten Disease: Anthony’s Story

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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

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