Advocacy

Global Genes Features Cure SMA in Patient Voice Project

April 8, 2016
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Global Genes recently published, “From Molecules to Medicines: How Patients Can Share Their Voices Through the Drug Development Process.” This toolkit was the product of […]

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Senate HELP Committee Passes Another 7 Innovation Bills

March 10, 2016
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The Senate Health, Education, Labor and Pensions (HELP) Committee yesterday passed an additional 7 bills out of committee. Along with the 7 bills previously passed […]

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Senate HELP Committee Passes Innovation Bills

February 9, 2016
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The Senate Health, Education, Labor and Pensions (HELP) Committee has passed 7 bills out of committee as part of its “step-by-step” approach to Innovation and […]

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Update on 21st Century Cures/Innovation: the Senate’s “Step-by-Step” Approach

February 2, 2016
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Cure SMA has been carefully monitoring the consideration of 21st Century Cures on Capitol Hill. As you know, the House passed legislation in July last […]

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Cure SMA Testifies Before FDA at PDUFA Meeting

January 19, 2016
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The Prescription Drug User Fee Act (PDUFA), the law that allows the FDA to collect fees from drug manufacturers to fund the new drug approval […]

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5th Annual Congressional Dinner Brings Together Families, Government and Industry

December 10, 2015
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On December 1, more than 120 people from the SMA community—including government, and industry partners—gathered for the 5th Annual “Hope on the Hill” Congressional Dinner. […]

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5th Annual Hope on the Hill Congressional Dinner Advances SMA Advocacy

November 20, 2015
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This year’s 5th Annual “Hope on the Hill” Congressional Dinner will be held on Tuesday, December 1, bringing together families, government, and industry for an […]

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Clinical and Regulatory Webinar and Extended Q&A Now Available

November 18, 2015
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A recording of last week’s Cure SMA Clinical and Regulatory Webinar is now available online. WATCH Our thanks again to our three panelists—Dr. Tim Franson, […]

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Tell Your Senator to Support Innovations for Healthier Americans

November 4, 2015
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We need your help in contacting your Senators to tell them that legislation promoting innovation and research is extremely important to you and that the […]

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Cure SMA Publishes Journal Article on the Patient Voice

October 27, 2015
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Cure SMA, along with collaborators from Biogen and the SMA Foundation, have published a paper in the journal BMC Neurology. Over the past year, we’ve […]

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