Xeroderma Pigmentosum

Xeroderma Pigmentosum Society, Inc.

437 Snydertown Road, Craryville, N.Y. 12521 USA

Telephone or Fax: 1 (518) 851- 2612

Toll free (within US):   1 (877) 977-2873 or 1 (877) XPS CURE

e-mail: xps@xps.org

web site: www.xps.org/xp.htm (also in Spanish, French, German, Italian, Portuguese, or Norwegian)

 

XP Support Group, United Kingdom

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Also See:

• Xeroderma Pigmentosum, GeneReviews.org
• Understanding Xeroderma Pigmentosum, (.pdf) National Institutes of Health
• Allelic variations of XP genes, interactive repository of mutations and other allelic variations of the genes involved in the DNA repair disorders, Xeroderma Pigmentosum (XP), Cockayne Syndrome (CS), Trichothiodystrophy (TTD), and other UV-sensitivity disorders,  JE Cleaver, University of California, San Francisco
• De Santis Cacchione Syndrome information, NORD (National Organization for Rare Disorders)
• National organizations, information on genetic conditions or birth defects
• Xeroderma Pigmentosum, Hellenic Association Dermatology  - Venerelogy
• Xeroderma Pigmentosum Registry, New Jersey Medical School, Dept. of Pathology, Rm. C-520,  185 South Orange Avenue, Newark, NJ 07103-2714, Phone: (201) 982-4405 or 201-982-7293

 

Camps

Camp Sundown, year-round "night camp" for sun sensitive children and their families, USA

Owl Patrol Night time Camp, United Kingdom 

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To locate a genetic counselor or clinical geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

Revised January 31, 2005

   

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Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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