Rare Disease Day is the globally-coordinated movement for rare disease, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Right now in Australia, there are more than 50 individuals and their families living with Batten disease. BDSRA Australia is dedicated to improving the lives and well-being of those patients and families affected by Batten disease through family support, funding vital research, and advancing education and awareness of Batten disease in Australia.