News

May 11, 2017

RUSP Nomination for SMA Accepted into Evidence Review

RUSP Nomination for SMA Accepted into Evidence Review

The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) announced that they have accepted spinal muscular atrophy into the review process for the Recommended Uniform Screening Panel (RUSP). The RUSP is a list of conditions that all newborns in the US...

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Topics: Our Impact, Advocacy, Front Page News

May 5, 2017

Update on the Passage of the AHCA

Update on the Passage of the AHCA

Yesterday, the House of Representatives passed the American Health Care Act (AHCA). The House passed legislation included an amendment that increases funding to mitigate a potential rise in health care premiums for those with pre-existing conditions; however, concerns remain about the impact...

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Topics: Advocacy, Front Page News

May 2, 2017

Cure SMA Grassroots Alert - AHCA

Cure SMA Grassroots Alert - AHCA

After a failed attempt in March, Members of Congress are trying once again to assemble legislation to repeal key parts of the Patient Protection and Affordable Care Act (ACA). The latest attempt, called the American Health Care Act (AHCA), could impact SMA patients’ access to health care...

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Topics: Advocacy, Front Page News

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