Lesch-nyhan syndrome

Organizations

Are there good support groups for Lesch-Nyhan Syndrome?

There are support groups for Lesch-Nyhan syndrome. Some are specific for the condition, and some are for features of the condition. They are the following:

Lesch-Nyhan Disease International Study Group

210 South Green Bay Road

Lake Forest, IL 60045

Phone: (847) 234-3154

Website: http://www.lesch-nyhan.org

Lesch-Nyhan Syndrome Registry

New York University School of Medicine

Department of Psychiatry

New York, NY 10012

Phone: (212) 263-6458

Email: lta1@nyu.edu

Website: http://www.lndinfo.org

CLIMB (Children Living with Inherited Metabolic Diseases)

Climb Building

176 Nantwich Road

Crewe, CW2 6BG United Kingdom

Phone: 4408452412173

Email: enquiries@climb.org.uk

Website: http://www.CLIMB.org.uk

NIH/National Institute of Neurological Disorders and Stroke

P.O. Box 5801

Bethesda, MD 20824

Phone: (301) 496-5751

Toll-free: (800) 352-9424

Website: http://www.ninds.nih.gov/

Purine Research Society

5424 Beech Avenue

Bethesda, MD 20814-1730 USA

Phone: (301) 530-0354

Email: PurineResearchSociety@verizon.net

Website: http://www.purineresearchsociety.org

The Arc

1825 K Street NW, Suite 1200

Washington, DC 20006

Phone: (202) 534-3700

Toll-free: (800) 433-5255

Email: info@thearc.org

Website: http://www.thearc.org

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126

Gaithersburg, MD 20898-8126

Phone: (301) 251-4925

Toll-free: (888) 205-2311

Website: http://rarediseases.info.nih.gov/GARD/

International Center for Disability Resources on the Internet

5212 Covington Bend Drive,

Suite 300

Raleigh, NC 27613

Phone: (919) 349-6661

Email: icdri@icdri.org

Website: http://www.icdri.org/

http://rarediseases.org/rare-diseases/lesch-nyhan-syndrome/

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