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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.



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.

 
 
 
 
 
 
 
 




DAWSON’S 1ST ANNUAL GOLF TOURNAMENT FOR XP AWARENESS

Monday, August 7, 2023 at 9:00 am
Grand Palms Spa & Golf Resort
110 Grand Palms Drive
Pembroke Pines, FL 33027

Check-in:  8:15 – 9:00 am
Banquet and Raffle immediately following the tournament

$225.00 per person or $800 per foursome

Limited to the first 120 registered and paid players.

Please fill out the following registration form and return to:
Hal Paldrmann
954-804-2987
hal@xpfamilysupport.org

Download Registration Form

Donations accepted from those that cannot participate.


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!

Click Here to Visit Website


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!

Click Here to Read Full Article

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!

Visit Our Facebook Page

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.

Read entire review ->



LATEST NEWS

 * XP and Covid 19
 * Meet Jax
 * Rare disease causes an extreme sensitivity to sunlight
 * Living with extreme chronic skin cancer risk – AIMEE MILOTA’S STORY

SUPPORT XPFSG



CONTACT US

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

© 2023 XP Family Support Group.

 * twitter
 * facebook

Follow us on Social Media
 * 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 Healthy Links
   * XP Conference Notes
   * Diagnostic Labs
   * School Scholarships
 * XP Connect
   * UV protection ideas
   * Vacation Ideas
   * School/IEP/504
   * XP Newsletters
   * Camp Discovery
   * Product Info
 * Support
   * XP Donations
   * Sponsor Appreciation
   * Current Fundraisers
   * Past Fundraisers
   * International Support
 * Gallery
 * Blog
 * Store
 * Contact

 * twitter
 * facebook


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