Search Results: spinraza

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

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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 […]

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Cure SMA Awards $75,000 Grant to Jean Giacomotto, PhD, University of Queensland, Australia

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Cure SMA has awarded a $75,000 research grant to Jean Giacomotto, PhD, at the University of Queensland, for his project, “Zebrafish models of Spinal Muscular […]

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Cure SMA Awards $30,000 Grant to Remy Bordonne, PhD, CNRS-Centre National de Recherche Scientifique, France

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Cure SMA has awarded a $30,000 research grant to Remy Bordonne, PhD, at CNRS-Centre National de Recherche Scientifique, for his project, “Identification of the protective […]

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Cure SMA Coverage and Payment Policy Project Continues to Move Forward

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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 […]

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Know Your Resources: How Congressional Caseworkers Can Help You Obtain Insurance Coverage for New Therapies

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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 […]

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Cure SMA Releases Care Series Booklet on Insurance

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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 […]

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Cure SMA Assists Hundreds of Families in 2016

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Each year, Cure SMA provides thousands of families with vital support and resources to help them live active, engaged and hopeful lives.  Our programs provide […]

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2016 Research Year-in-Review: An Historic Year for Our Community

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This has been an historic year for the SMA community. On December 23, the FDA announced its approval of Spinraza, the first-ever approved treatment for […]

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Biogen Resources for the SMA Community

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Biogen has provided the following update on resources they have made available for the SMA community: Biogen recently announced that the U.S. Food and Drug […]

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Help Us Shape the Future Together, and Reach our Goal of $750,000

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This has been an historic year for the SMA community. On October 28, our pharmaceutical partners at Biogen and Ionis announced that their New Drug […]

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