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 100 countries
Every year, thousands of events are
organised across the world.
IN THE NEWS
On 28 February 2026, Rare Disease Day will once again bring together millions of people worldwide to spotlight the realities faced by those living with rare diseases and… Continue reading Rare Disease Day 2026 highlights global inequities and amplifies youth voices in call for lasting change
Living with a rare disease means navigating stigma, isolation, and uncertainty. For young people, these challenges are compounded by the pressures of growing up, starting… Continue reading Raising Youth Voices 2026: Shaping the Future of the Rare Disease Community.
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
