ABOUT US
Celebrating over 20 years of Empowering Hope, Illuminating Lives, Envisioning a Future of Unity, and Supporting those living with XP.
MISSION & HISTORY
Empowering Families.
Elevating Voices.
Advancing Hope.
Founded over 20 years ago by a group of dedicated families and medical professionals, XPFSG was built on the belief that knowledge is power—and community is everything. What started around kitchen tables has grown into a recognized nonprofit that supports families across the globe.
Today, we remain committed to our grassroots mission: helping XP families feel seen, understood, and supported—every step of the way.
The XP Family Support Group (XPFSG) has stood beside families navigating the challenges of Xeroderma Pigmentosum (XP) and other UV-sensitive conditions.
We are a nonprofit organization devoted to improving the quality of life for individuals with XP by providing education, advocacy, emotional support, and access to vital resources.
XP is a rare genetic disorder—but no family facing it should ever feel alone. That’s why we exist.
What began as a small group of caregivers and advocates has grown into an international network of patients, families, physicians, researchers, and partners—all working together to bring light to those living in the shadows.
Testifying and advocating for people with XP and other sun sensitivities.
Kansas Governor Laura Kelly signs Senate Bill 63 making it legal to apply window film to the front windshield of a vehicle.
Providing a Voice at the Coalition of Skin Diseases
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.
The XPFSG is one of many organizations that are part of the Coalition of Skin Disease.
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The Coalition of Skin Disease Hill Day provides the opportunity to advocate on behalf of Skin Disease patients with U.S. Senate and House Representatives.
CORPORATE
PARTNERS
We are beyond grateful to the generosity of our Corporate support sponsors. Their gift of time, funds, and in-kind services have helped the XPFSG expand our reach and depth of support to XP families. Become a Corporate Support Sponsor today!
Skin and Hand Protection Gloves
A wish experience can be a game-changer for a child with a critical illness
M Health Fairview Masonic Children’s Hospital
M Health Fairview Pediatric Specialty Clinic.
This Minnesota family has shared its family BBQ sauce recipe donates all proceeds to the XP Family Support Group! Please try this delicious sauce and support a great cause!