News

June 15, 2017

SMA Newborn Screening Moves Forward in Missouri and Florida

SMA Newborn Screening Moves Forward in Missouri and Florida

The spinal muscular atrophy community is celebrating significant progress toward adding SMA to newborn screening panels in two states.

Missouri to Become the First State to Screen for SMA

In Missouri, Senate Bill 50 has been passed by both the Missouri House and Missouri...

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Topics: Community & Awareness, Advocacy, Front Page News

June 14, 2017

Cure SMA Advocacy Activities for the 2017 Year-to-Date

Cure SMA Advocacy Activities for the 2017 Year-to-Date

The first half of 2017 has been an active six months for Cure SMA and SMA advocates. Cure SMA and members of our community have been working with stakeholders groups across multiple settings to ensure our patients’ voices are heard. Below is a summary of the key issues and audiences...

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Topics: Community & Awareness, Advocacy, Front Page News

April 25, 2017

SMA Community's Voice Heard “Loud and Clear” at Last Week's Patient Focused Drug Development Meeting with the FDA

SMA Community's Voice Heard “Loud and Clear” at Last Week's Patient Focused Drug Development Meeting with the FDA

On April 18, 2017, the SMA community—families, clinicians, researchers, industry and regulators—gathered for a Patient-Focused Drug Development (PFDD) Meeting with the FDA.

As part of the reauthorization of the Prescription Drug User Fee Act (PDUFA), the FDA is required to...

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Topics: Community & Awareness, Our Impact, Advocacy, Front Page News

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