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.

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 holds a bi-annual XP Medical Conference and kids camp.

The XP Community mourns the loss of Robert McCabe with heavy hearts

As a cherished and active member of the XPFSG, his presence will be deeply missed. Our heartfelt condolences and prayers are with his family and friends as they navigate through this difficult time.

Robert McCabe Obituary

Robert Philip McCabe, Jr., 61, was born on August 4, 1962 in Boston, Massachusetts and passed away on May 24, 2024 in Taunton, Massachusetts.
Robert attended North Quincy High School, Bridgewater Raynham Regional High School, and Bridgewater State University.
He worked for Taunton High School.
In order to honor Robert’s memory, donations can be made to the XP Family Support Group and Raynham Youth Baseball and Softball Association.
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XPFSG International Medical Conference 2024

Phoeniz, AZ
November 8th – 10th, 2024

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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!

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2022 XP Family Medical Conference Held at the Graduate Hotel

Last month, the XP Family Support Group hosted an International XP Medical Conference at the Graduate Hotel in Minneapolis. The conference was a great success!

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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

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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.

“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.

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