Front Page News
Cure SMA Coverage and Payment Policy Project Continues to Move Forward
The Cure SMA Coverage and Payment Policy Project has two distinct but complementary tracks: Outreach on behalf of our community. We’re working with public and […]
Read More ›Genentech Roche Releases Community Letter with Clinical Trial Updates
Genentech Roche provided the following community statement with clinical trial updates for SUNFISH (Type 2/3), FIREFISH (Type 1) and JEWELFISH. Dear SMA community, At Genentech […]
Read More ›Cure SMA Releases Schedule for the 2017 Annual SMA Conference
Cure SMA has released the schedule for the 2017 Annual SMA Conference, to be held at Walt Disney World in Orlando, FL, June 29 – […]
Read More ›Cure SMA Awards $140,000 Grant to Joceyln C̫t̩, PhD, University of Ottawa
Cure SMA has awarded a $140,000 research grant to Joceyln Côté, PhD, at The University of Ottawa, for his project, “Investigating the mechanism by which […]
Read More ›American College of Obstetricians and Gynecologists Recommends Expanded SMA Carrier Screening
The American College of Obstetricians and Gynecologists has released updated guidance on carrier testing for genetic conditions. The updated guidance includes, for the first time, […]
Read More ›AveXis Reports Results from Phase 1 Trial of AVXS-101
AveXis, Inc., a clinical-stage gene therapy company developing treatments for patients suffering from rare and life-threatening neurological genetic diseases, today reported topline results from the […]
Read More ›Know Your Resources: How Congressional Caseworkers Can Help You Obtain Insurance Coverage for New Therapies
Your elected officials who represent you in Washington, D.C. have caseworkers in their regional and district offices in your communities. These caseworkers can help you […]
Read More ›Cure SMA Awards $140,000 Grant to Arthur Burghes, PhD, The Ohio State University
Cure SMA has awarded a $140,000 research grant to Arthur Burghes, PhD, at The Ohio State University, for his project, “Identification of SMA modifiers and […]
Read More ›Cure SMA Releases Care Series Booklet on Insurance
Cure SMA is excited to announce the launch of our newest care series booklet, Choice and Connection to Care: A Health Insurance Roadmap for People […]
Read More ›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 […]
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