USA’s Batten Disease Support & Research Association
Batten Disease Support and Research Association (BDSRA) began in 1987 by a group of parents looking for strength and support for a disease that only gives fear and uncertainty to those it affects.
This is the only family support organization in the United States and Canada. Other than the Australian Chapter, Chapters can be found in New Zealand, South Africa, Spain and South America. We help families worldwide.
The world-wide group of the BDSRA has established a directory of over 300 affected families, publishes a quarterly magazine called "The Illuminator" and holds an annual conference in July with parallel sessions for medical practitioners, parents and siblings.
Further information about the American Association can be found at their website: www.bdsra.org