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
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“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
Congenital Muscular Dystrophy (CMD) affected individuals, Kelly and Avery are making their voices heard. Together they hope to tackle misconceptions surrounding disability and give a… Continue reading Two Affected With Congenital Muscular Dystrophy Strive for Rare Inclusion
Vietnamese version right here, English version is below. Xin chào cả thế giới, Tôi là Đỗ Phước Huy, 30 tuổi, và tôi đến từ Việt… Continue reading Light of life
Rare Disease Day 2024 raises awareness for the community of over 300 million people worldwide living with a rare disease and their families. We reached… Continue reading Rare Disease Day 2024 posters
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
Driving Awareness by amplifying Young voices in the Rare Disease community We organised this Rare Disease Day 2024 webinar to explore effective ways to reach… Continue reading Rare Disease Day webinars