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Services available for Families affected by Batten Disease
Read through the various services BDSRA offers to families impacted by Batten Disease
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Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.
- Information and education about Batten Disease and related medical and educational issues.Recent Batten Research News
- 1-800 toll free number accessible from anywhere in the USA and Canada
- Family support through networking with other families. Visit our Parent Forum
- Parent Mentor Program which matches parents of newly diagnosed children with selected experienced parents having a child with the same form of Batten Disease.
- Sibling Program which provides a "safe" means for siblings of children affected with Batten Disease to communicate with other siblings and work on their fears and concerns.
- Sibling Carrier Testing Program helps the brothers and sisters of children with Batten disease to be carrier tested if they have no insurance coverage.
- Grandparent Support Program was created to support grandparents and other relatives cope with the devastation of Batten Disease to be able to understand and help their own children emotionally and physically.
- Annual Conference brings together families, scientists, doctors, and educators from around the world providing teachings and sharing.
- Medical referrals & a medical advisory board whose purpose is to assist families. View BDSRA Advisory Board.
- Education Support Program helps both families and schools learn how to understand the process of Batten Disease as it affects education.
- Equipment Exchange Program allows for no longer needed equipment to be donated to families who may need expensive or hard to find equipment at no cost.
- Diagnosis Review Program was created to assist Physicians and families through the Medical and Scientific Review Boards to evaluate all previous test results, then direct them to what steps would be beneficial in diagnosing their child.
- Tissue Donation Program provides scientists with tissue samples needed to advance research and pursue a cure for Batten Disease.
- Bereavement Outreach Program which provides continuing support after the death of a children with Batten Disease.
- Quarterly Newsletter. Sign-Up for the Illuminator today!
- Family directory for those families who desire to have contact with other families. See the Faces of Batten Disease.
- 14 Chapters in the United States plus chapters in Canada, Australia, South Africa, Spain and South America. View our Chapters and Associations