#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 görüntüleme • 3 yıl önce
🧬 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 görüntüleme • 3 yıl önce
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 görüntüleme • 3 ay önce
We've published our 2026 Rare Disease Action Plan ahead of #RareDiseaseDay. It aims to speed up diagnosis and improve access to care and treatment for rare diseases, to help improve the lives of families like the Coles. Find out more:
Department of Health and Social Care29,996 görüntüleme • 3 ay önce
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 görüntüleme • 1 yıl önce
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 görüntüleme • 1 yıl önce
🧬 On #RareDiseaseDay, we're taking further action to improve the lives of people with rare conditions. This includes: 🧬 research to help speed up diagnosis and treatment 🧬 specialist care as close to home as possible Read our action plan:
Department of Health and Social Care52,853 görüntüleme • 2 yıl önce
When David started to experience double vision in December 2020, he put this down to excess screen time. Find out how a visit to his local Specsavers marked the beginning of a life-saving journey 💚 Learn more: #RareDiseaseDay #StoriesBehindTheStats
Bone Cancer Research Trust36,321 görüntüleme • 2 yıl önce
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