Public Group
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This group is for SMA patients, caregivers and medical professionals to discuss the latest research and news related to SMA. Here, information regarding treatments, research and development will be shared, and any input from the SMA community is welcome.
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Kelly Miller replied to the topic Article regarding risdiplam global access in the forum
SMA Therapy News 5 months, 3 weeks agoThat’s pretty cool that they are thinking about the other countries. That’s been the main problem with Biogen – people everywhere can’t get it. I’ve already got an appt scheduled with my neurologist for the 1st week in June in hopes that the FDA approves it in May as has been speculated. They just need to let Type II people have it also!
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Alyssa Silva replied to the topic Article regarding risdiplam global access in the forum
SMA Therapy News 5 months, 3 weeks agoThanks for sharing, DeAnn. That’s great news. Makes me wonder what’s going to happen to Biogen with other pharmaceutical companies making these treatments more financially feasible.
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Justin joined the group
Research and Development 5 months, 3 weeks ago -
Scott Inouye joined the group
Research and Development 9 months ago -
Andres Ceballos joined the group
Research and Development 9 months, 3 weeks ago -
Tracy Odell joined the group
Research and Development 11 months, 3 weeks ago -
DeAnn R started the topic Scholar Rock Announcement in the forum
SMA Therapy News 1 year, 2 months agoIt seems like advancements are coming at a fast rate. This statement from Scholar Rock indicates a new trial being initiated. http://www.curesma.org/news/scholar-rock-statement-may2019.html
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Javaria Malik joined the group
Research and Development 1 year, 3 months ago -
Atilla posted an update in the group
Research and Development 1 year, 3 months agoResearchers discover nerve repair mechanism
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Jennifer Lewis joined the group
Research and Development 1 year, 3 months ago -
Dave Woodward joined the group
Research and Development 1 year, 5 months ago -
Souad al baba joined the group
Research and Development 1 year, 6 months ago -
DeAnn R posted an update in the group
Research and Development 1 year, 7 months agoBig news in the SMA world, The FDA Accepts BLA Filing and Priority Review for AVXS-101 to Treat SMA Type I “ZOLGENSMA” Learn more here: http://www.curesma.org/news/novartis-avexis-bla-acceptance.html?fbclid=IwAR29Y0Pam_tLaDD-vcTb18ODBldi47rO1Z-2ewr9edUGP6-PvTyxkg–el0
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Exciting news! @smajourney51 just did a podcast about this, which will be posted tomorrow.
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Patricia Hall joined the group
Research and Development 1 year, 7 months ago -
Kelly Miller joined the group
Research and Development 1 year, 8 months ago -
Tigran Kostanyan joined the group
Research and Development 1 year, 8 months ago -
DeAnn R posted an update in the group
Research and Development 1 year, 8 months agoNews from AveXis that they’ve filed for FDA approval for AVXS-101as gene therapy for type 1 infants. Here’s the article link: http://www.curesma.org/news/avexis-fda-approval-type-i.html?fbclid=IwAR3_IZEuX87u9mbmyykliyC6WBFnRgA2E8b863oSlgCZKU92rMQguAKh7P8
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Thanks for posting! Yeah I got the email this morning. It’s certainly exciting.
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DeAnn R joined the group
Research and Development 1 year, 8 months ago -
Gina Geary joined the group
Research and Development 1 year, 8 months ago -
Alex Zai joined the group
Research and Development 1 year, 9 months ago - Load More
