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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140
days
to go

300M

people with rare diseases

600+

events worldwide

106

countries involved

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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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Thousands of events
in over 100countries

Every year, thousands of events are
organised across the world.

In the news

A photo with two men and one woman sitting. The man on the right is in a wheelchair and smiling. The other man is on the left, his back to the camera, and is handing the woman a juice bottle. She is in the middle facing the camera and smiling.

Imagine a world where everyone can access the spaces and resources they need to thrive, regardless of their condition. As Rare Disease Day approaches, join… Continue reading Enhancing Accessibility in Physical and Digital Spaces

Pink spots on purple background. The text reads "Upcoming Webinar; Driving Awareness by Amplifying Young Voices In the Rare Disease Community; Thursday Feb 8, 2024, 2pm (CET); Follow for more; rarediseaseday.org"

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

A variety of people smiling as part of the thumbnail for the rare disease day video 2024.

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

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