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About SMA:

Patient Resources

aboutsma

About SMA: Patient Resources

General Info about SMA

  • SMA Foundation's About SMA
    The Foundation’s informational page on SMA. Includes an FAQ section, informational materials, and a glossary of SMA-related terms.
  • DNA Learning Center's Informational SMA Videos
    An SMA educational website from the DNA Learning center. Includes sections on the causes, genetics, diagnosis, current and potential therapies, and daily lives of patients with SMA. Features video interviews, 2-D and 3-D animations, and doctor/researcher narratives.
  • Treat-NMD's SMA Page
    The Treat-NMD Neuromuscular Network’s Page on SMA, including information on care standards and patient registries.

 

SMA Genetics

 

SMA Genetic Testing

  • NCBI's Genetic Test Sites
    The National Center for Biotechnology Information’s international list of laboratories offering genetic testing for SMA.

 

SMA Care

  • Cure SMA's Daily Life Page
    Includes sections on education, equipment, home life, insurance, mentoring, parenting, recreation, relationships, and travel, as well as a separate section for adults with SMA.
  • Cure SMA's Medical Issues Page
    Includes sections on Respiratory Care, Physical and Occupational Therapy, Orthopedics, Nutrition, and Palliative Care.

 

Healthcare Providers

  • MDA in Your Community
    Muscular Dystrophy Association’s clinic location feature. Enter your state to find a clinic in your area.
  • European SMA
    The Foundation’s list of SMA specialists in Europe, as well as a list of Muscular Dystrophy clinicians, many of whom have expertise in SMA.

 

SMA Therapeutics

  • The Foundation’s informational page on the drug development process and the SMA therapeutics pipeline.
  • SMA Therapies
    DNA Learning Center’s page on current and potential therapies for SMA. Includes video narratives by clinicians, researchers, and SMA families.
  • Antisense Therapy for SMA
    DNA Learning Center’s page on a potential therapy. Includes both video narratives by clinicians and researchers and 2-D animations.

 

Clinical Trials

  • SMA Clinical Trials
    Through ClinicalTrials.gov, a list of all the SMA clinical trials that are currently recruiting patients and the respective contact information for each trial.

 

Patient Registries

  • International SMA Patient Registry
    The International SMA Patient Registry, formerly at Indiana University, and supported by Cure SMA. The registry is a resource that aims to connect individuals and families affected by SMA and researchers interested in studying SMA. The registry helps researchers learn more about patients interested in participating in clinical trials.

 

Patient/Family Support & Advocacy

  • Cure SMA
    An SMA advocacy organization with networking, information, and support services for patients and families, including:

  • Muscular Dystrophy Association
    A nonprofit health organization that provides comprehensive healthcare and support services, advocacy, and education for a number of neuromuscular diseases, including SMA.

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