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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 qualitative data on this population […]

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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 recognize and raise awareness for […]

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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 greatest passions, hobbies, and tidbits […]

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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 greatest passions, hobbies, and tidbits […]

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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 FIREFISH study in infants with […]

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Cure SMA Launches Virtual Therapy Program for Adults with SMA

February 19, 2021
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Adults with spinal muscular atrophy (SMA) are invited to take advantage of Cure SMA’s latest support resource, the Adults with SMA Virtual Therapy Program, which has been generously sponsored by […]

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