In addition to your Novartis Patient Support™ Case Coordinators, there are also a number of organizations and events that can provide additional information and connect you with a community of families and caregivers who share your experience.
Cure SMA
Cure SMA is an organization dedicated to helping those in the spinal muscular atrophy (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)
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.
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.
Share your ITVISMA experience through the SMA Ambassadors Program
Hearing from someone with firsthand experience can make a real difference. As part of the SMA Ambassadors Program, you can share your experience and bring greater visibility to what life on treatment can look like.
Join the community
It can be helpful to meet and join other families affected by SMA. There are numerous social groups and organizations that would love to have you join the conversation. Here are some places to get started: