Learn more about the organisations that provide support and spread awareness about SMA and other rare diseases.
SMA Australia provides a support system to the Australian SMA community. They offer a number of resources including disease information, fact sheets, news/research updates, as well as organising regular fundraising events.
Muscular Dystrophy Australia is a full service organisation involved in research for all Muscular Dystrophies, and provides quality-of-life programs and services for all those affected by the disorder.
Global Genes is a non-profit patient advocacy organisation 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.
Rare Voices Australia (RVA) is Australia’s non-profit, national peak organisation advocating for all who live with a rare disease. They provide a strong common voice to advocate for a health policy and healthcare system that works for those with rare diseases.
The Genetic and Rare Disease Network (GaRDN) provides current and relevant genetics and rare disease information to individuals and family members affected by genetic and rare conditions. GaRDN works to ensure people with genetic and rare diseases have timely access to relevant, up-to-date information about their condition and healthcare and other services available to them.