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<p>For many people, appearance or comfort is the most important consideration when choosing a hat to wear. But for people living with Xeroderma Pigmentosum (XP), an inherited disease that causes an individual to be extremely sensitive to ultraviolet radiation, health and safety must take precedence. As part of her ongoing efforts to raise awareness and [&hellip;]</p>

The XP Family Support Group (XPFSG) is committed to helping people with the rare genetic disorder called Xeroderma Pigmentosum, or XP. People with this condition cannot tolerate the ultraviolet radiation in sunlight, so even a few minutes of sun can cause cell damage that inevitably turns to cancer.

Dear Patients and Family members Thank you for your participation in our research at the National Institutes of Health on the DNA repair conditions xeroderma pigmentosum, trichothiodystrophy and Cockayne syndrome. During these difficult times we would like to provide you with some information to help you and your families stay healthy.

Meet Jax, a bubbly little boy with a big, bright smile that can light up any room. Some might believe that having XP would slow Jax down, but that’s not the case at all.

Everyone has sun-sensitive skin. It’s the reason we tan and sunburn. It’s why freckles, age spots, and skin cancers appear. Some people are born more sun sensitive than others. People who have an extreme sensitivity to sunlight are born with a rare disease known as xeroderma (zer-o-der-ma) pigmentosum (pig-men-toe-sum).

When my daughter Aimee was born, I noticed there was something different about her skin. It was very dry and sensitive, much more so than a typical baby, and eventually our pediatrician recommended we see a dermatologist.

Book Review: Midnight Sun by Trish Cook (soon to be a major motion picture) 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.

(This is the second in an occasional series that will follow Riley McCoy through her senior year at Dana Hills High.) The new queen sparkled under the stadium lights, accepting tearful congratulations, hugs and kisses from those who took joy in her coronation. Her story seemed like a fairy tale.

A 17-year-old girl with a rare condition that prevents her from exposing her skin during daylight hours had her night in the sun on Friday when she was crowned homecoming queen of Dana Hills High School.

Have you ever truly considered the sunset? Riley McCoy has. When you think about it, the sun doesn’t set at all. It doesn’t drop or recede. The sun is fixed and relentless to the point that, every evening, the earth turns away.

The important documentary Hidden From Light had its first screening in San Diego, California on October 16, 2009. The premier was held at the New Children’s Museum with more than 200 people in attendance.

XP Family Support Group is a part of The Center for Car Donations.   http://www.centerforcardonations.com   Donations of cars can in turn be used to support XPFSG.

<p>An article from Window Film Mag.com &#8211; Click Here to Read</p>