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As a mother of a child with a form of Batten disease, every day is a fight — not just against the disease, but against a system that wasn’t built to protect rare children, especially those from underserved Latino communities like mine. I never imagined I’d become a voice for…
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The global Batten disease community will come together Monday, June 9, to connect and spread awareness about the rare genetic disorder. To mark International Batten Disease Awareness Day, the Batten Disease Support and Research Association (BDSRA) is planning a virtual 5K in hopes of raising $100,000 to help…
Becoming educated and informed about Batten disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your journey.
There is no cure for Batten disease yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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