International Batten Disease Awareness Day
9 June 2026
Standing Together for Children and Families Living with Batten Disease
International Batten Disease Awareness Day is observed globally on 9 June to shine a light on Batten disease - a rare and fatal neurodegenerative condition that primarily affects children. On this day, we honour the lives of those impacted, raise public awareness, and unite our voices to drive change through research, advocacy and support.
Why This Day Matters
Batten disease is a group of inherited disorders of the nervous system that typically begin in childhood. It leads to progressive symptoms such as vision loss, seizures, mobility decline, and cognitive impairment. There is currently no cure.
Every year, families across Australia and around the world face this devastating diagnosis with courage and resilience. International Batten Disease Awareness Day is a chance to acknowledge their journey, amplify their voices, and work towards better outcomes.
History
Formally recognised as National Batten Disease Awareness Day, held on 31 March, it was acknowledged by the Office of the Prime Minister, Canberra, in 2000 and was observed yearly in Australia. Early in 2018, it was announced that Australia would join the global community in a united voice celebrating and raising awareness together. The first International Batten Disease Awareness Day was held on Saturday 9 June 2018.
Forget Me Knot - A Global Campaign of Remembrance and Hope
In 2025, BDSRA Australia proudly launches the Forget Me Knot campaign to mark International Batten Disease Awareness Day. We invite all Australians to tie a knot around your finger, wrist, car mirror, mailbox, or anywhere visible as a powerful gesture of support and remembrance for the children and families affected by Batten disease. Share your knot on social media using the hashtag #ForgetMeKnot and tag @bdsraaustralia to help spread awareness far and wide. For more information, see our dedicated ForgetMeKnot webpage.
Thank You
On International Batten Disease Awareness Day, we thank our community of families, carers, researchers, volunteers, healthcare professionals, and donors. Your continued support is the thread of hope that weaves through every knot tied.
Your donation helps fund vital family support programs, research, and advocacy efforts in Australia. https://bdsraaustralia.org/donate.
Every dollar counts, and donations above $2 are tax deductible.