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Connect with a growing community of support for CLN2 disease

You are not alone—there are many support resources for families and caregivers of children with CLN2 disease. Caring for a child who has CLN2 disease can be emotionally and physically demanding. That’s why finding other parents and professionals to talk to can make the disease easier to manage. If you have a child with Batten disease, these organizations welcome you and want to answer your questions.

BDSRA logo

Batten Disease Support and Research Association (BDSRA)

Founded in 1987 by parents seeking to build a network for those diagnosed with Batten disease, the BDSRA is the largest support and research organization dedicated to Batten disease in North America. It is committed to raising funds for research, providing family support services, enhancing education, raising awareness, and advocating for legislative action.

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Noah’s Hope

Created by a family with 2 children affected by CLN2 disease, this organization has raised funds for research all over the world.

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Hope4Bridget

Dedicated to raising awareness and funding for research, this site shares support and experience from a family raising a daughter with CLN2 disease.

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