National Organization for Rare Disorders (NORD)
nordrare.bsky.social
NORD is a patient advocacy organization leading the fight to improve the lives of rare disease patients. Alone we are rare. Together we are strong.® www.rarediseases.org
👤 Joined on 16 January 2025
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- 16 Oca 2025, 21:31
🎉 Bluesky'e katıldı - İlk kullanıcı adı:
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❤️ Beğendiği Gönderiler
We recently lost my former staffer Asal Sayas after an incredibly brave battle with cancer. I’m joining with @markey.senate.gov & @carson.house.gov — with the support of Asal's family — to introduce legislation named in her memory to tackle the growing rate of cancer in adults under 50.
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New medical treatments used to take a decade to develop. Artificial Intelligence might cut that in half. Experts weigh in on how AI is accelerating biomedical breakthroughs, and who stands to benefit. RSVP: ow.ly/EhLB50ZLCe4 #AI #Healthcare #PatientAccess #PublicPolicy @nordrare.bsky.social
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Medlive and @nordrare.bsky.social just launched Rare Disease Expert Briefings, a new series where experts bring Rare Disease Summaries to life. Our first, on Rett syndrome, is live now, with Dr. David Lieberman of @bostonchildrens.bsky.social: vist.ly/5dnmy
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Clinical trials can save lives from cancer. But not everyone can access them. Congress has an opportunity to change this with a new bill. Help us spread the word so more people understand why #ClinicalTrials matter and why we need Congress to pass this legislation.
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It was insightful to attend this recent event and learn the absolute latest in the collective quest for better #raredisease care, treatment, funding, drug development and repurposing, and how the #NIH and #FDA are innovating to accelerate desperately needed therapies.
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