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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National Organization for Rare Disorders (NORD) (@nordrare.bsky.social) é um usuário do Bluesky desde 16 janeiro 2025. Tem 263 seguidores, segue 44 contas e publicou 125 posts.
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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.
Ver postNew 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
Ver postMedlive 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
Ver postClinical 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.
Ver postIt 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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