Parents & Caregivers

April 2, 2015

 

Xeroderma Pigmentosum (XP) is a scary diagnosis. It is considered a "rare disease" because it affects so few people each year. This means that it doesn't get as much attention or funding as other diseases. It also means that there's not as much information available about XP. 

 

The most important thing to know is that you are not alone. XP does affect hundreds of people each year. The Xeroderma Pigmentosum Society is here to help you. You have an extended family of people who know what you are going through and are here to help. On this blog you'll find postings, articles and information about XP, symptoms and tips to make living with XP a little easier. 

 

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ADDRESS

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