Early detection and intervention of neuromuscular diseases is critical in order to deliver comprehensive and high-quality healthcare to obtain the highest possible quality of life. MDA advocates for access to healthcare and other vital services from the moment a baby is born and continuing throughout the life of someone living with neuromuscular disease.
Working to reinstate a mechanism within the Federal government to add new newborn screens to the Recommended Uniform Screening Panel (RUSP).
Supporting reauthorization of HRSA and CDC newborn screening programs and continuing to protect it from changes that may impede future research going forward.
To support efforts to expand newborn screening, MDA is:
Ensuring all 50 states screen newborns for Pompe disease and Duchenne muscular dystrophy. Currently, all states screen for spinal muscular atrophy (SMA).
Working to add Duchenne muscular dystrophy to the RUSP, which would encourage more states to screen for DMD.
Protecting health insurance programs that are vital for the neuromuscular community, including Medicare, Medicaid, the Affordable Care Act, and the private insurance market.
Protecting tax credits and other programs to help people afford health coverage
Improving access to genetic testing and genetic counseling services.
Improving vital home and community-based care programs.
Ensuring access to all of our community’s medical device needs.
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