National Organization for Rare Disorders (NORD)
@nordrare.bsky.social did:plc:vkrin2s7sih2kmtxxpk466r5
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
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Zusammenfassung
National Organization for Rare Disorders (NORD) (@nordrare.bsky.social) ist seit 16 Januar 2025 auf Bluesky. Das Konto hat 263 Follower, folgt 44 Konten und hat 125 Posts veröffentlicht.
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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.
Post anzeigenNew 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
Post anzeigenMedlive 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
Post anzeigenClinical 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.
Post anzeigenIt 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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