The mission of the XP Foundation is to create, maintain, and operate a comprehensive patient registry for individuals affected by Xeroderma Pigmentosum.
The XP Registry drives patient advocacy, enables scientific research, and advances education.
The Foundation accomplishes its mission through the XP RARE Initiative,
which serves as its primary program framework.
Xeroderma Pigmentosum (XP) is an ultra rare genetic disease that requires lifelong protection from ultraviolet exposure, specialized medical care, and ongoing clinical monitoring.
There are approximately 100 children and 150 adults in the United States with XP.
This is truly a one-in a million disease and therefore has limited support, funding, and research.
If you are interested in learning more from a research perspective - common medical diagnosis along with XP, psycho-social behaviors, financial burden, and sun protection behaviors the XP Foundation can provide you insight.
You can learn more about XP and receive family support through the
XP Family Support Group at xpfamilysupport.org. The XP Family Support Group assist newly diagnosed families in the United States and offers a medical conference for both care-givers and patients.
The Foundation establishes and maintains patient registries, databases, and natural history studies related to XP. These efforts support scientific research, improve understanding of disease progression, and contribute to better clinical care and outcomes.
The Foundation advocates for individuals and families affected by XP for medical advancement, improved healthcare access, insurance coverage, and accommodations that benefit individuals affected by XP.
The Foundation advances scientific and medical research related to XP and related DNA repair disorders. This includes collaboration with researchers, academic institutions, healthcare providers, governmental agencies, and other charitable organizations.
The Foundation provides education and resources to patients, families, and caregivers affected by XP. It also increases awareness and understanding of XP among healthcare professionals, educators, policymakers, and the public.
The XP Foundation is organized exclusively for charitable, educational, and scientific purposes within the meaning of Section 501(c)(3) of the Internal Revenue Code, or the corresponding section of any future federal tax law.
Copyright © 2026 XP Foundation All Rights Reserved
We use cookies to analyze website traffic and optimize your website experience. By accepting our use of cookies, your data will be aggregated with all other user data.