06/09/2026
🧡 June 9 is International Batten Disease Awareness Day 🧡
Today, we join the rare disease community in raising awareness of Batten disease—a group of rare, inherited neurodegenerative disorders that primarily affect children. Batten disease causes progressive neurological decline, including vision loss, seizures, loss of mobility, cognitive impairment, and a shortened life expectancy.
For many families, a Batten disease diagnosis changes life forever. Yet despite its devastating impact, Batten disease remains largely unknown outside of the rare disease community.
Today, we honor the children, adults, families, caregivers, researchers, and advocates working toward better treatments, improved support, and ultimately a cure. International Batten Disease Awareness Day is observed each year on June 9 to raise awareness, amplify family voices, and inspire action through research and advocacy.
Learn more: https://bdsrafoundation.org/
🧡 Learn.
🧡 Share.
🧡 Make an Impact.
Together, we can help ensure that no family faces Batten disease alone.
