Patient advocacy groups

CLN2 patients and families can connect with the Batten disease community to access valuable support and resources

Several groups exist today that can help provide more information on practical ways for families, carers and friends to cope with NCL diseases. The following two organisations have a global reach and can provide more information or connect families affected by any type of Batten disease to their local area groups.

bdfa-uk.org.uk

Batten Disease Family Association (BDFA)

A UK-based organisation whose aim is to support families, raise awareness and facilitate research in CLN2 disease and other NCLs.

bdsra.org

Batten Disease Research Foundation (BDSRA)

The BDSRA is dedicated to funding research for treatments and cures and providing family support services for CLN2 disease and other NCLs.

In addition to these two groups, there are many more organisations worldwide that provide support to families and carers of children with CLN2 disease.

In addition to these 2 groups, there are many more organizations worldwide that provide support to families and caregivers of children with CLN2 disease.

Margie Frazier, PhD
Executive Director
Batten Disease Support and Research Association USA

Andrea West
Chief Executive
Batten Disease Family Association UK

Meet Margie and Andrea—2 dynamic leaders who are dedicated to supporting the families of children with CLN2 disease through their respective Batten disease advocacy organizations.