#rarediseaseday
#BGTC is proud to observe #RareDiseaseDay 2023 with “Taylor’s Story.” Watch the full film highlighting the patient perspective and underscoring our commitment to accelerate therapies for ultra-rare diseases: #RareDisease #RDDNIH #ShowYourStripes
Foundation for the National Institutes of Health351,827 次观看 • 3 年前
🧬 On #RareDiseaseDay, we're launching a new plan to make sure people receive faster diagnosis & specialist care for rare diseases. It builds on the first Rare Diseases Action Plan, which helped 1,000 people get a new complex diagnosis in the past year.
Department of Health and Social Care316,169 次观看 • 3 年前
Today is #RareDiseaseDay Rowan lives with Epidermolysis Bullosa (EB), a rare genetic disease that makes skin as fragile as a butterfly’s wings, but her courage isn’t rare, and neither is the global community of 400+ million people living with rare diseases. Through EB Research Partnership, families, scientists, and supporters are pushing research forward, pioneering progress in EB and helping reshape what’s possible for rare diseases. It’s not a matter of if. It’s a matter of time. 🦋 Learn about EB and how you can help at
Pearl Jam31,423 次观看 • 3 个月前
It's Rare Disease Day I'm one who lives with a rare, incurable illness Addison's Disease affects fewer than 9000 in 68,000,000 It's life threatening, there's no cure & we are kept alive artificially Showing another side of my life here to help raise awareness #RareDiseaseDay💜
Giulia Bould63,854 次观看 • 1 年前
A complicated journey with lots of love and cuddles ❤️ Amanda and Rich Cole describe life with Ben, who has the rare genetic disorder Malan syndrome. Our Rare Diseases Action Plan is improving care, treatment and research for rare conditions. #RareDiseaseDay Genetic Alliance UK
Department of Health and Social Care44,357 次观看 • 1 年前
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