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Spinraza Access and Updates

We will continue to update our community on administration sites, insurance coverage, and community resources and support programs for Spinraza.

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Learn more about the approval of Spinraza.

We recently sat down with SMA researchers, Cure SMA staff, and families in our community to talk about the approval of Spinraza (nusinersen). Listen to their words of gratitude and excitement.

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Spring Events

Spring event season is about to kick off. Join us! Find an upcoming event in your area, or host your own event.

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Cure SMA Coverage and Payment Policy Project Continues to Move Forward

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....

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Genentech Roche Releases Community Letter with Clinical Trial Updates

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...

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American College of Obstetricians and Gynecologists Recommends Expanded SMA Carrier Screening

The American College of Obstetricians and Gynecologists has released

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AveXis Reports Results from Phase 1 Trial of AVXS-101

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...

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

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...

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