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Patient Resources

Our team in the Spinal Muscular Atrophy Program at Boston Children’s Hospital will talk with you about your child’s condition, discuss any questions you have, and try to help you find the support you need. The following resources may also be helpful to you.

Resources at Boston Children's

The Boston Children’s patient resources website offers information on the wide array of support services available to families at Boston Children’s.

Mom (left), dad (right) pose with son in wheelchair (center)

Resources outside of Boston Children's

  • Our SMA clinical and research program is part of the Pediatric Neuromuscular Clinical Research (PNCR) Network. The group’s website offers a variety of information including educational materials on how clinical trials work.
  • The SMA Foundation promotes research and raises awareness about SMA. Its website offers educational materials and features news from the SMA community.
  • Cure SMA supports families, funds research, and hosts an annual conference. Its website also provides information from local chapters.
  • The Muscular Dystrophy Association funds research and provides support services for families affected by muscular dystrophy as well as other neuromuscular diseases including SMA.