Today, the Advisory Committee on Heritable Disorders in Newborns and Children voted to recommend to the Secretary of Health and Human Services that spinal muscular atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP), the national list that guides states on which diseases should be tested for at birth. Newborn screening is essential . . .
Today the US Senate is holding a hearing on the newest health care reform bill under consideration. MDA has filed the following comment with the Committee in advance of the hearing to urge Congress to avoid rushing through the legislative process and to commit to a bipartisan approach to health care reform.
Join MDA and representatives from Southwest and Alaska Airlines on Thursday, Aug. 10 at 3 p.m. EDT for an informative conversation about accessible air travel. This webinar is a continuation of MDA’s collaborative accessible air travel efforts as we team up with representatives from the airline industry to discuss traveling with a disability and as we explore ways to help eliminate barriers to access.
With a robust therapy development pipeline and more potential treatments moving forward, MDA believes it is critical that the national programs that support newborn screening efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.
This week, MDA joined with nine other patient advocacy organizations – including American Cancer Society Cancer Action Network, Cystic Fibrosis Foundation, March of Dimes and National Organization for Rare Disorders – to respond to the Senate’s newly-released draft of the Better Care Reconciliation Act (BCRA).