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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

Dołączył(a) do Bluesky

Obserwujący
263
Obserwowani
44
Posty
125
Dni w rankingach
0

Podsumowanie

National Organization for Rare Disorders (NORD) (@nordrare.bsky.social) to użytkownik Bluesky, który dołączył 16 stycznia 2025. Ma 263 obserwujących, obserwuje 44 kont i opublikował(a) 125 postów.

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Ostatnio polubione posty

Publiczne polubienia z sieci Bluesky.

  • Senator Amy Klobuchar@klobuchar.senate.gov

    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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  • National Consumers League@nationalconsumers.bsky.social

    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 - A PlatformQ Health Brand@medliveofficial.bsky.social

    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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  • American Cancer Society Cancer Action Network@acscan.bsky.social

    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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  • RASopathies Network@rasnet.bsky.social

    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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