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Parents & Caregivers

Apr 2, 2015
1 min read

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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.

9 Comments


stephengonzalez
Oct 23

For families facing XP, haiphorestaurantgame.org this resource offers reassurance, practical guidance, and a caring community for life beyond the sun.

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House Sunny
Oct 12

Good scary games do not just scare you for a second; they make you question every room, every sound, and every dark corner you walk past.

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Jones Buck
Oct 09

One thing I like about free online games is the mix of casual and more challenging titles. There is usually something different to try whenever I visit.

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dasik.rysz72
Oct 08

I came across Mylo while searching for answers to the question, what can I write off on my taxes? The article gives a practical overview of common business expenses that may be deductible and also highlights the importance of keeping good records throughout the year.

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Hannah Walters
Hannah Walters
Oct 08

A close friend recently had to adjust her daily routine after learning more about a rare condition affecting someone in her family. Finding reliable information and connecting with people who understand the situation made a real difference for everyone involved. It also reminded me how difficult it can be to balance family responsibilities with university deadlines. During one particularly busy week, I had several calculations to finish and searched for resources that could help me do my math assignment while giving me enough time to support my friend and her family.

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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

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