Advocacy
SMA is Submitted to the Federal Newborn Recommended Uniform Screening Panel (RUSP)
Cure SMA and the SMA Newborn Screening Coalition are excited to announce we have completed the submission of SMA to the Recommended Uniform Screening Panel […]
Read More ›Cure SMA to Host Webinar with the FDA and Patient Advocates
Cure SMA is pleased to announce a new webinar on interactions between the FDA and the SMA community. The webinar will be held on March […]
Read More ›Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA
Registration is now open for the SMA Patient-Focused Drug Development (PFDD) meeting with the FDA. The PFDD meeting will be held at the College Park […]
Read More ›Updated SMA Drug Pipeline Released as First Commercial Patient Receives Spinraza
With the news today that the first-ever patient has received the first commercial Spinraza dose, we are releasing an updated version of our SMA drug […]
Read More ›SMA Patient-Focused Drug Development Meeting with FDA Set for April 18, 2017
Tuesday, April 18, 2017, has been announced as the date for the SMA Patient-Focused Drug Development Meeting with the FDA. At the Patient Focused Drug […]
Read More ›Join Us for an Upcoming Webcast about SPINRAZA TM (nusinersen)
Please join Cure SMA, MDA and representatives from Biogen to learn more about SPINRAZA™ (nusinersen). As you know, SPINRAZA recently received FDA approval in the […]
Read More ›FDA Approves Spinraza for SMA
On December 23, the FDA announced that it has approved SpinrazaTM (nusinersen) to treat spinal muscular atrophy, making it the first-ever FDA-approved therapy for SMA. […]
Read More ›Cure SMA Participates in a Special FDA Listening Session
Last week, Cure SMA participated in a listening session with FDA Commissioner Robert M. Califf, MD, MACC. The FDA organized the listening session in order […]
Read More ›SMA Community Conducts Outreach Visits with Members of Congress
On November 30, members of the SMA community met with 17 different legislative offices— eight from the Senate and nine from the House of Representatives. […]
Read More ›Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage
On Tuesday, November 29, more than 160 people from the SMA community – including government and industry partners – gathered for the 6th Annual “Hope […]
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