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Research Updates from Scholar Rock

March 19, 2021
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Scholar Rock Presents TOPAZ Interim Analysis Data for Apitegromab in SMA Scholar Rock recently shared 6-month interim analysis data from the TOPAZ Phase 2 clinical […]

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Community Statement from Genentech

March 18, 2021
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Dear SMA Community, Based on our commitment to the SMA community to provide transparent, timely updates related to our medicines, we are writing to share […]

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Community Statement from Novartis Gene Therapies

March 18, 2021
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Dear Cure SMA Community, Novartis Gene Therapies is committed to patient safety and the ongoing monitoring of adverse events as it relates to the use […]

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Evrysdi Research Updates from Genentech

March 18, 2021
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New 2-year data show Evrysdi continues to demonstrate improvement or maintenance of motor function in people aged 2-25 years with Type 2 or 3 SMA […]

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Zolgensma Research Updates from Novartis Gene Therapies

March 18, 2021
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New Zolgensma data demonstrate age-appropriate development when used early, real-world benefit in older children, and durability 5+ years post-treatment Novartis Gene Therapies recently shared new […]

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Cure SMA Publishes Quality of Life in Teens and Young Adults Manuscript in Orphanet Journal of Rare Diseases

March 11, 2021
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Current knowledge regarding clinical meaningfulness and quality of life amongst teens and young adults with spinal muscular atrophy (SMA) is limited. Much of the available […]

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Biogen SMA Q1 2021 Community Statement

March 8, 2021
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      Dear Members of the SMA Community, Each year, the entire rare disease community comes together on the last day of February to […]

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Community Spotlight: I am…Viola Dwyer

February 26, 2021
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February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we have been posting stories about SMA community members, showcasing their […]

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Jessica’s Story: Remembering Piper Grace

February 25, 2021
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February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we will be posting stories about SMA community members, showcasing their […]

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Results from Genentech’s Evrysdi Study in Infants with Type 1 SMA Published in NEJM

February 25, 2021
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Genentech, a member of the Roche Group, announced in a press release that Evrysdi™ (risdiplam) data from the dose finding Part 1 of the pivotal […]

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