Cure SMA provides a nationwide support system to the spinal muscular atrophy community. For those newly diagnosed, they offer a number of resources, including care packages, information packets, and a family support staff. Cure SMA funds a comprehensive research program focused on developing treatments for all types and ages of SMA. They host the largest annual SMA conference in the world for families and members of the scientific community.

The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. It also works to fulfill the unmet need for patients with rare disease and to empower the community.

Created in 1991, the mission of FightSMA is to strategically accelerate the search for a treatment and cure for spinal muscular atrophy by raising disease awareness and funding research.

Global Genes​ is a non-profit patient advocacy organization working to eliminate the challenges of​ rare disease by building awareness, educating the global community, and providing critical connections and resources that equip advocates to become activists for their disease. Numerous tools, resources and educational events can be found on the Global Genes website.

The Muscular Dystrophy Association is a source for news and information about neuromuscular disease, research, treatments, cures, and services. They fund worldwide research, providing support to families nationwide and rallying communities to fight back through advocacy, fundraising, and local engagement.

The National Organization for Rare Disorders (NORD), established in 1983, is the leading advocacy organization addressing the challenges faced by patients and families impacted by rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

The SMA Foundation has invested millions in the development of critical, validated research tools and other drug discovery resources. It was established in 2003 by Loren Eng and Dinakar Singh, parents of a child with spinal muscular atrophy.