Resources
CLIMB (Children Living with Inherited Metabolic Diseases)
Climb Building
176 Nantwich Road
Crewe, CW2 6BG
United Kingdom
Tel: 4408452412173
Fax: 4408452412174
Email: [email protected]
Internet: http://www.CLIMB.org.uk
National Tay-Sachs and Allied Diseases Association, Inc.
2001 Beacon Street
204
Brookline, MA 02146-4227
USA
Tel: (617)277-4463
Fax: (617)277-0134
Tel: (800)906-8723
Email: [email protected]
Internet: http://www.NTSAD.org
The Arc
1825 K Street NW, Suite 1200
Washington, DC 20006
Tel: (202)534-3700
Fax: (202)534-3731
Tel: (800)433-5255
TDD: (817)277-0553
Email: [email protected]
Internet: http://www.thearc.org
Batten Disease Support and Research Association
1175 Dublin Road.
Columbus, OH 43215
USA
Tel: (866)648-8718
Email: [email protected]
Internet: http://www.bdsra.org
Children's Brain Diseases Foundation
350 Parnassus Avenue
Suite 900
San Francisco, CA 94117
USA
Tel: (415)665-3003
Fax: (415)665-3003
Email: [email protected]
National Association for Parents of Children with Visual Impairments (NAPVI)
P.O. Box 317
Watertown, MA 02272-0317
Tel: (617)972-7441
Fax: (617)972-7444
Tel: (800)562-6265
Email: [email protected]
Internet: http://www.napvi.org
NIH/National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824
Tel: (301)496-5751
Fax: (301)402-2186
Tel: (800)352-9424
TDD: (301)468-5981
Internet: http://www.ninds.nih.gov/
National Pediatric Myoclonus Center
P.O. Box 19643
Springfield, IL 62794-9643
USA
Tel: (217)545-7635
Fax: (217)545-1903
Email: [email protected]
Internet: http://www.omsusa.org
National Batten Disease Registry
New York Institute for Basic Research in Developmental Disabilities
1050 Forest Hill Rd
Staten Island, NY 10314
USA
Tel: (718)494-5201
Fax: (718)982-6346
Tel: (800)952-9628
Email: [email protected]
Lysosomal Diseases New Zealand
16 Woodleigh Place
Ohauiti
Tauranga, 6008
New Zealand
Tel: 075448868
Email: [email protected]
Internet: http://www.ldnz.org.nz
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/
Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: [email protected]
Internet: http://www.madisonsfoundation.org
Hide & Seek Foundation for Lysosomal Disease Research
6475 East Pacific Coast Highway Suite 466
Long Beach, CA 90803
Tel: (877)621-1122
Fax: (866)215-8850
Email: [email protected]
Internet: http://www.hideandseek.org
NCL Resource
c/o Sara E Mole PhD
MRC Laboratory for Molecular Cell Biology
University College London
Gower Street
London, WC1E 6BT
United Kingdom
Tel: 442076797257
Email: [email protected]
Internet: http://www.ucl.ac.uk/ncl
Beyond Batten Disease Foundation
P.O. Box 200998
Austin, TX 78720
Tel: (512)275-2600
Fax: (512)835-4687
Tel: (877)622-8836
Email: [email protected]
Internet: http://www.beyondbatten.org
Source: http://www.webmd.com