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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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.
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
Today, 20 November 2024, marks the official launch of the Rare Disease Day 2025 global campaign, beginning the 100-day countdown to 28 February 2025. This… Continue reading Launch of the Rare Disease Day 2025 Campaign
