Batten Disease Support and Research Association

About This Association

BDSRA is dedicated to helping families through every stage of this disease. Founded by parents seeking to build a network around Batten disease, BDSRA is the largest support and research organization dedicated to all forms of Batten disease in North America. BDSRA offers several programs and services to support and inform families affected by Batten disease. All of the services of BDSRA are available across the nation and are available at all levels of participation. Some of the individuals who turn to the association have need of the full range of services – contact, newsletter, referrals, and consultations – and are willing to assist the Association in compiling information and providing professionals with facts and observations. Others want simply to receive the newsletter and remain anonymous to all other aspects of BDSRA. Whatever the needs, BDSRA can meet them.

Publications

Two quarterly newsletters.Several books about various aspects of Batten Disease.

Conventions

2023 BDSRA Annual Conference

Specialties:

1. Medicine

Information Summary