Related Disorders: Santavnori, Jansky, Bielschowsky, Spielmeyer, Sjogren, Kuf, Parry.
The Batten Disease Support and Research Association (BDSRA) is an international support and research networking organization that works with families of children and young adults with the inherited neurological degenerative disorder, Battens Disease. They act as a national registry for NCL researchers throughout the world, maximize the opportunities of patients with Batten to lead as normal a life as possible, educate lay persons and professionals about the special needs of patients and their families, and provide a parent communication network for information and emotional support. The association has local chapters and a directory of these is available. They will provide assistance to an individual who wishes to start a local support group, and do parent-to-parent matching.
The Batten Disease Support and Research Association publishes a quarterly newsletter, The Illuminator, that is included with membership and they publish several brochures. They provide a new parent packet that includes information about the association and the disorder. The Association has a lending library of articles, abstracts, books and videos that are available to members.