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.
Newborn Screening
Improving and strengthening newborn screening by reauthorizing the newborn screening program and continuing to protect it from changes that may impede future research going forward.
Currently, all 50 states screen newborns for spinal muscular atrophy (SMA). MDA is working to get all states to cover Pompe disease and Duchenne muscular dystrophy in this lifesaving program.
Increase access to health care
Ensuring access to careregardless of needs, insurance coverage, or location.
Ensuring health care coverage is affordable, accessible, and comprehensive for all, including those living with neuromuscular disease.
Ensuring 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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