About SMA:

SMA Patient Resources

SMA Foundation

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.
  • Fight SMA
    Fight SMA’s information page, including a detailed outline and comparison of the four types of SMA.
  • 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.
  • A Guide to the Consensus Statement for Standard of Care in SMA
    Highlights the sections on managing breathing, eating, and nutrition for patients with SMA.
    Prepared by the International Coordinating Committee for SMA Clinical Trials, a guide to the Consensus Statement for Standard of Care in SMA by Wang et.al. (2007).

 

Healthcare Providers

  • MDA in Your Community
    Muscular Dystrophy Association’s clinic location feature. Enter your city, state, or zip code in the green box on the right of the page and scroll down 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:

  • FightSMA
    An SMA organization with detailed SMA information and a number of patient resources.
  • 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.