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Services & Chapters
Our
Family Services Include:
 Information and education about Batten Disease and related medical and
educational issues.
Family support through
networking with other families.
A 1-800 telephone
number available to everyone.
Quarterly Newsletter.
Medical referrals & a medical advisory board whose purpose is to assist families. Refer
to Batten Testing page.
Family directory
for those families who desire to have contact with other families.
Annual three day
conference designed to bring families together for education,
support, and sharing.
26 Chapters in the
United States, Canada. Spain and Australia and an affiliate in New Zealand.
Sibling Support Group.
Parent Mentoring
Program.
Bereavement Outreach
Program
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State, Regional & National Chapters of BDSRA:
- Alabama Chapter — 205-668-0812
- Australian
Chapter — 011-61-2-418-2043
- Northern California Chapter — 707-446-9509
- Southern California Chapter — 619-424-9208
- Canadian Chapter — 306-789-9047
- Delaware Valley Chapter (Eastern Pennsylvania and Southern New
Jersey) — 856-435-0212
- Florida
Chapter — 727-894-4318
- Heart of America (MO & KS) — 913-671-8151
- Hispanic American Chapter — 888-379-2546
- Louisiana Chapter — 504-781-5260
- Metro NY/NJ (Eastern New York & Northern New Jersey) — 631-586-4315
- Michigan Chapter — 734-591-3062
- Mid-Atlantic Chapter (MD, DE, DC, WV, North. VA) — 301-790-1417
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Midwest
Chapter (IL & WI) — 708-460-3054
- Minnesota Chapter — 651-429-3871
- Mississippi Chapter — 601-588-2067
- New England Chapter (CT, RI, MA, VT, NH, ME) — 413-467-2294
- New Zealand Associate — 646-385-8103
- Ohio Chapter — 740-927-7551
- Pittsburgh Area Chapter (Greater Pittsburgh and Western Pennsylvania)—more info forthcoming
- Pacific Northwest Chapter (WA, OR, ID) — 360-293-2856
- Republic of South Africa — 011-27-16-976-5294
- Southeast Chapter (NC, SC, VA) — 919-774-1933
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Spanish Chapter — more info forthcoming
- Tennessee Chapter — 901-377-0923
- Texas Chapter — 713-333-1216
- Upstate New York — 585-637-5722
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