Support for patients with SMA and their caregivers
Patients can access additional support from various advocacy groups
Patient advocacy organizations and other disease foundations can help caregivers and families contend with a new diagnosis, learn about spinal muscular atrophy (SMA), and build meaningful connections.
Cure SMA
Cure SMA is an organization dedicated to helping those in the SMA community. From practical support programs to funding SMA research, they help caregivers and people with SMA access care, including finding a treatment center.
Muscular Dystrophy Association (MDA)
MDA is a leading resource for clinicians, patients, and caregivers affected by neuromuscular diseases, including muscular dystrophy, amyotrophic lateral sclerosis (ALS), and SMA. MDA supports access to multidisciplinary care through its nationwide network of clinics, while also advancing research and providing resources to help families navigate disease management.
EveryLife Foundation for Rare Diseases
The foundation’s mission is to empower people in the rare disease community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
Global Genes
A globally connected community committed to eliminating the challenges of rare disease by providing information, resources, and connections to all communities affected by rare diseases.
National Organization for Rare Disorders (NORD)
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.
Learn more about advocacy groups that support and educate families of patients living with SMA at Novartis.com.
ALS, amyotrophic lateral sclerosis; MDA, Muscular Dystrophy Association; NORD, National Organization for Rare Disorders; SMA, spinal muscular atrophy.