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
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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
The Battle of the Rare One word to describe people living with rare diseases or illnesses is “dismissed”. “We are at war with an invisible… Continue reading The Battle of the Rare
“Happiness can found in the darkest times if one only remembers to turn on the light” so Dumbledore says. When I got diagnosed with rare… Continue reading You choose the light
My dad told me children were being sent home to die & that I was one of only 15 kids in all of Arizona who… Continue reading Born to be rare, born to fight for tomorrow!
Our Son Nicholas was born with Rubinstein-Taybi Syndrome(RTS) which is a rare genetic condition, affecting about 100,000 to 125,000 newborns each year worldwide. RTS caused… Continue reading Nick’s Light