Xeroderma pigmentosum (XP) is a rare genetic disorder that prevents the body’s ability to repair damage caused by ultraviolet light. This means that even the smallest exposure to sunlight or other UV light can cause severe sunburn, ulcers and skin cancers. The Xeroderma Pigmentosum Society (XPS) is dedicated to helping XP families, patients and those afflicted with similar life-threatening sun-sensitivity disorders.


The XP Society is a 501(c)(3) not-for-profit charitable foundation for XP organized in 1995 by Caren and Dan Mahar, whose youngest daughter, Katie, has xeroderma pigmentosum. The organization is a means to provide the XP family support and information needed to cope daily with XP. The XP Society has always been international in its scope and support. The XP Society offers information, support, advocacy, and protection to the XP family, patient and caregiver while promoting research\ for a cure.


Disclaimer: These pages are developed by XP families for information and support. They should never replace a medical visit or recommendation by a physician.


437 Snydertown Road

Craryville, NY 12521, USA


Telephone: (518) 929-2174


Email: xps@xps.org

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Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

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© 2015 by Xeroderma Pigmentosum Society