AZLatina
endrarediseases.bsky.social
Blue Dog Dem. Rare Disease Patient Advocate for Amyloidosis that killed my Mom & ALS that is killing my friends. Passionate about Enviro Justice, Foster Care & Gun Safety. Proud GGD of a Righteous Gentile murdered by Nazis. 💙LA sports.
👤 Joined on 17 November 2024
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- 17 Kas 2024, 20:55
🎉 Bluesky'e katıldı - İlk kullanıcı adı:
@endrarediseases.bsky.social
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Another win for our #amyloidosis patients with FDA approval of acoramidis for #ATTR cardiomyopathy! @hfsa.bsky.social #cardiosky #medsky @accintouch.bsky.social @amyloidosis.bsky.social
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Regenxbio says gene therapy strengthened boys with Duchenne muscular dystrophy; muscle performance tests in small trial seen as step to accelerated approval www.statnews.com/2024/11/18/d...
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Regenxbio $RGNX says gene therapy strengthened boys with Duchenne muscular dystrophy Pivotal study started, top-line data could come early 2026. FDA accelerated approval filing to follow. www.statnews.com/2024/11/18/d... $SRPT
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MATT GAETZ IS OUT!Now we brace to see who Trump next names as a possible Attorney General. But to be clear, this is a second LOSS for Trump (after Rick Scott - Trump's pick for Senate Majority Leader - was rejected by Senate Republicans).
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Today has been a rough day. Lots of emotions. Glenn is not doing well. He’s not going to recover. As he said, “it’s time to go”. Your support has meant the world to us as we navigate ALS. Today we met with doctor at the hospital to discuss MAiD. #EndALS
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