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 * 

 * Home
 * About Us
   * Board Members
   * XP Medical Advisors
   * XP News
   * XP Memorials
 * Learn
   * What is XP
   * What is UV
   * Understanding UV
   * The UV Index
   * UV Links
   * The Sun
   * XP Articles and Publications
   * Diagnosis XP
   * Important International Health Links
   * XP Conference Notes
   * Diagnostic Labs
   * School Scholarships
 * XP Connect
   * Bright Ideas
   * Vacation Ideas
   * School/IEP/504
   * XP Newsletters
   * Camp Discovery
   * Product Info
 * Support
   * XP Donations
   * Sponsor Appreciation
   * Current Fundraisers
   * Past Fundraisers
   * International Support
 * Gallery
 * Videos
 * Blog
 * Store
 * Contact





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XERODERMA PIGMENTOSUM

Also known as XP, is a rare inherited disease affecting both males and females.
It causes a person to be extremely sensitive to the damaging effects of
ultraviolet radiation. Undiagnosed and untreated, Xeroderma Pigmentosum can lead
to the early onset of skin cancer and blindness. In addition, approximately 20%
of people with Xeroderma Pigmentosum also develop progressive neurological
disease.



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The Xeroderma Pigmentosum (XP) Family Support Group exists to improve the
quality of life for people with XP and other diagnosed UV light conditions. The
Xeroderma Pigmentosum Family support group strives to create awareness and
educate the public about XP, as well as to raise funds to promote research,
create collaborations with international XP partner organizations, and provide
family grants for UV protective equipment and travel assistance for attending
the annual XP national convention.


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CHECK OUT GRANDPA’S BBQ SHOP!

This Minnesota family has shared its family BBQ sauce recipe and is donating all
proceeds to the XP Family Support Group! Please try this delicious sauce and
support a great cause!


https://www.grandpasbbqshop.com/






Peyton Madden shaking hands with Kansas Governor Laura Kelly as she signs Senate
Bill 63 making it legal to apply window film to the front windshield of a
vehicle. Great job Peyton for testifying and advocating for people with
Xeroderma Pigmentosum and other sun sensitivities. #thisisXP #xpfsg

We encourage you to “like” and “share” this post on our Facebook page.   Thank
You!  www.facebook.com/XPFSG





Coalition of Skin Diseases Luncheon
(attended by Michele Milota & Miranda Murphy)

The American Academy of Dermatology was founded in 1938. It is the largest, most
influential and representative dermatology group in the United States. With a
membership of more than 20,000, it represents virtually all practicing
dermatologists in the United States, as well as a growing number of
international dermatologists.





XP FAQs
Click here to view the most common questions and answers about XP.





“MIDNIGHT SUN” AS REVIEWED BY TITANIUMAMY

The book Midnight Sun is told from the perspective of a girl named Katie who has
Xeroderma Pigmentosum (XP). But, the story is greatly exaggerated. Katie says
that even if the sun touches her skin, she will die. So she stays locked inside,
only going out at night. Here are some parts of the book that I, as person who
has XP, found amusing and disturbing.

Read entire review ->




Riley McCoy Named Homecoming Queen






XERODERMA INTERNATIONAL COALITION













LATEST NEWS

 * Technology Raffle
 * XP and Covid 19
 * Meet Jax
 * Rare disease causes an extreme sensitivity to sunlight



SUPPORT XPFSG





CONTACT US

XP FAMILY SUPPORT GROUP
10259 Atlantis Drive
Elk Grove, CA. 95624
Phone: (916) 628-3814
Email: contact@xpfamilysupport.org



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