Batten Disease Support and Research Batten Disease Support and Research Association

Record last updated 2021/05/27 Comment on this info .Update this info

Narrative

Support and networking for families of kids with Batten Disease.  Children and adults with Batten disease have inherited genetic material from their parents that may take some years to come to bear in their everyday lives. And when it does, families are often in shock when they learn how a normal child or adult (Kufs form) could change quickly, and without seeming cause. Regardless of where your loved one is in the progression of Batten disease, BDSRA wants you to know there is a community of people like you learning about and coping with this life limiting illness.

Program Type

• Advocacy

Populations Served

• Batten Disease

Ages Served

• Birth to 3
• 3 - 4
• 5 - 8
• 9 - 13
• 14 - 18
• 19 - 22
• 23 – 59
• 60 +

Additional Information

• Fees: Free Service