WELCOME TO
XP FAMILY SUPPORT GROUP
Changing lives through connection, protection, and care.
What is XP?
Xeroderma Pigmentosum (XP) is a rare, inherited condition that affects both males and females. People with XP are extremely sensitive to ultraviolet (UV) light, including sunlight and some artificial indoor lighting. Without rigorous protection, exposure to UV can lead to severe sunburns, skin cancer, vision loss, and—in about 20% of patients—progressive neurological complications.
1
IN A MILLION
XP affects approximately one in every million people.
50%
About half of individuals with XP show signs of extreme sun sensitivity within their first few months of life.
20%
Around one in five XP patients will develop progressive neurological disease.
OUR MISSION:
Standing with XP families every step of the way.
XP Family Support Group is dedicated to improving the quality of life for individuals with Xeroderma Pigmentosum (XP) and other UV-sensitive conditions. We offer resources, community, advocacy, and hope to families affected by this rare genetic disorder.
Cases of Reported XP Patients in the United States
OUR IMPACT
For 20+ years, XPFSG has focused on empowering and connecting XP patients, caregivers, and communities. Helping to foster understanding, resilience, and hope in navigating the challenges associated with this rare genetic condition. Together, we aim to promote awareness, advocate for improved access to care, and ultimately enhance the quality of life for those impacted by XP.
90% of every dollar donated helps strengthen families living with XP, giving them the tools to cope and live productive lives.
XPFSG has helped alleviate some of the financial burdens for families along their UV protectant journey. We are approaching over $100,000 in UV protective equipment purchased to support XP families.
Through connectionsand collaboration with our six
International XP Partner organizations we help share
Informationand foster global awareness about XP.
Supports Research & Passing Legislation
10+ Medical Conferences held and $750,000 spent in support of XP Families and to bring awareness to communities.
150+ Families Supported Since Inception
DONATE
Help Us Reach Our $100,000 Annual Fundraising Goal.
You can help play a key role in helping us deliver essential support to XP Families in the U.S.
$25 provides UV protective gloves for an XP patient
$150 provides a UV light meter for an XP family
$250 provides a Welcome Care Kit for a newly diagnosed XP family (provides essential items including a UV meter and UV protective hood)
$500 sponsors an XP child to attend our biannual Kids Camp
$1000 sponsors an XP family to cover travel expenses for our biannual Medical Conference and Kids Camp.
