Advocacy

SMA is Submitted to the Federal Newborn Recommended Uniform Screening Panel (RUSP)

March 1, 2017
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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 […]

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Cure SMA to Host Webinar with the FDA and Patient Advocates

February 16, 2017
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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 […]

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Registration Opens for the SMA Patient-Focused Drug Development Meeting with the FDA

February 2, 2017
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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 […]

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Updated SMA Drug Pipeline Released as First Commercial Patient Receives Spinraza

January 12, 2017
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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 […]

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SMA Patient-Focused Drug Development Meeting with FDA Set for April 18, 2017

January 9, 2017
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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 […]

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Join Us for an Upcoming Webcast about SPINRAZA TM (nusinersen)

December 29, 2016
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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 […]

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FDA Approves Spinraza for SMA

December 23, 2016
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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. […]

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Cure SMA Participates in a Special FDA Listening Session

December 19, 2016
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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 […]

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SMA Community Conducts Outreach Visits with Members of Congress

December 12, 2016
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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.  […]

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Annual Congressional Dinner Brings SMA Community Together on the Eve of 21st Century Cure Bill Passage

December 1, 2016
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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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