Connecting with the SMA community
Ellie has 2 copies of SMN2 gene
Treated at 15 days old
Receiving a spinal muscular atrophy (SMA) diagnosis can be overwhelming and confusing. Just know you’re not alone. In addition to your Novartis Patient SupportTM Case Coordinators, there are a number of groups and events that can provide you with additional information and connect you with a community of other families and caregivers who share your experience.
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 patients access care, including finding a treatment center.
EveryLife Foundation for Rare Diseases
The foundation’s mission is to empower the rare disease patient 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.
Muscular Dystrophy Association (MDA)
Transforming the lives of people living with muscular dystrophy, amyotrophic lateral sclerosis (ALS), and related neuromuscular diseases, through research, care, and advocacy. This organization can also help you find a treatment center.
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.
Join the ZOLGENSMA community
It can help to meet and join other SMA families. There are numerous social groups and organizations that would love to have you join the conversation. Here are some places to get started: