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
600+
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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
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
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
