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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.
Share your colours Download Info Pack300M
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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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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One in a Million
My name is Anna, I am 17 years old, and I am considered ‘one in a million.’ 10 years ago, I was diagnosed with Chronic… Continue reading One in a Million
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Thousands of events
in over 100countries
Every year, thousands of events are
organised across the world.
IN THE NEWS
Every year on Rare Disease Day, landmarks around the world are illuminated in rare disease colours. Since the first edition in 2008, the Light Up… Continue reading Light Up for Rare: How a Global Initiative Creates True Impact
A Global Call to Action for the 300 Million People Living with a Rare Disease 28 February 2025 – The 18th edition of Rare Disease… Continue reading Press Release: Rare Disease Day 2025
Rare Disease Day 2025 carries a simple but powerful message: More Than You Can Imagine. It’s a reminder that rare diseases touch more lives, involve… Continue reading More Than You Can Imagine – 101
