XP FAMILY SUPPORT GROUP

Name

XP FAMILY SUPPORT GROUP

Legal name

XP Family Support Group

Website

https://xpfamilysupport.org

Company type

Private

Founded year

2003

Operating status

Operating

Headcount range

1–10 employees

Short description

XP Family Support Group is a US nonprofit that provides education, advocacy, resources, and UV-protection products and programs for individuals and families affected by Xeroderma Pigmentosum and other UV-sensitive conditions, serving 150+ families since 2003.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Support Services

NAICS

Other Individual and Family Services (624190), Child and Youth Services (624110)

SIC

Services-Social Services (8300)

akta.pro primary industry

Family & Parenting Support Services (BPAGAEAC)

akta.pro secondary industries

Maternal, Child & Family Health Organizations (BPAGACAF), Family & Parent Support Services (Parent Coaching, Advocacy) (EDAJALAK)

Keywords

• Rare disease support
• Patient advocacy services
• Uv protection equipment
• Genetic disorder support
• Community health resources

Headquarters

HQ city

Sacramento

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: Primary revenue stream from individual donors, corporate sponsors, and foundation grants. 90% of every dollar donated goes directly to strengthening families living with XP.
2. UV Protection Products: Sale of UV-safe plastic and UV meters to XP families. Products include UV-Safe Plastic ($30 for 2 sheets) and Solarmeter UVA+B Meters ($250). Newly diagnosed families receive reduced pricing.
3. Event Fundraising: Revenue from biannual Medical Conference and Kids Camp events including sponsorships, registration fees, and fundraising activities during events.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels6 records

Core offering

XP Family Support Group is a U.S. nonprofit organization dedicated to improving the quality of life for individuals with Xeroderma Pigmentosum (XP) and other UV-sensitive conditions. It delivers practical support through UV protection equipment (UV meters, UV-safe plastic sheeting, gloves, Welcome Care Kits), biannual Medical Conferences and Kids Camps, school advocacy/IEP/504 plan guidance, and a community network linking 150+ families with medical professionals and six international XP partner organizations.

Product overview

XP Family Support Group operates as a nonprofit organization offering a focused portfolio of UV protection products and community support programs for individuals with Xeroderma Pigmentosum. The core product offerings include the Solarmeter Sensitive UVA+B Meter (Model 5.7), a specialized UV measurement device priced at $250, and UV Safe Plastic sheeting for creating protective barriers and face shields at $30 per set. The organization supplements these products with a Welcome Care Kit program for newly diagnosed families containing essential protective items. Beyond product sales, XPFSG provides community programs including biannual Kids Camp and Medical Conferences that offer safe, UV-protected environments for XP patients and families. The organization also facilitates connections to external vendors for specialized UV protective products including gloves (via Foxgloves Inc.) and sun-protective clothing.

Differentiator

Problem solved

Functional benefit

Products and services

• UV Safe Plastic High-performance UV-blocking plastic sheeting that provides a barrier for creating mobile safe zones. Lightweight, flexible, and ideal for constructing custom face shields, hoods, and protective visors for children and adults with Xeroderma Pigmentosum. Sold at $30 per 2 sheets with limited supply of 4 sheets per year per patient; free plastic is provided to families with only shipping charged.
• Solarmeter Sensitive UVA+B Meter (Model 5.7) Semiconductor UV sensor meter with photodiode chip and UV filter that is completely insensitive to visible light longer than 400nm and infrared radiation. Spectral response covers the 260-400 nm UV region and is well-matched to the solar UV spectrum, measuring UV radiation from 1 to 1,999 microwatts per square centimeter. Priced at $250, with reduced pricing available for newly diagnosed XP families.
• Welcome Care Kit A program bundle provided to newly diagnosed XP families containing essential protective items, including a UV meter and a UV protective hood, to help families begin managing UV exposure immediately.
• Kids Camp Biannual safe, UV-protected event for XP children providing community, recreation activities, and peer connection in a controlled UV-safe environment. Sponsorship tier of $500 covers an XP child's attendance.
• XP Medical Conference Biannual medical conference bringing together XP families, physicians, and researchers for education, clinical updates, and community support. Sponsorship tier of $1,000 covers an XP family's travel expenses to attend the Medical Conference and Kids Camp.
• UV Protective Equipment Distribution Program Provision of UV protective gloves, UV light meters, UV-safe plastic, and other protective equipment to XP families, supported by donations and approaching $100,000 in cumulative equipment purchases.

Quantifiable outcome

• 90% of every dollar donated helps strengthen families living with XP
• +4 more outcomes

Named customers1 record

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Nine partnerships are on record, tiered core and supporting.

• Foxgloves, Inc.coreOthersCorporate partner supplying ProtexGloves skin and hand protection gloves for XP patients. Contact: (888) 322-4450, Beacon, NY 12508.
• M Health Fairview Masonic Children's HospitalcoreOthersHealthcare partner providing medical services and pediatric specialty clinic access for XP patients through M Health Fairview Pediatric Specialty Clinic.
• Make-A-Wish FoundationsupportingOthersWish-granting organization that provides life-changing experiences for children with critical illnesses, including XP patients.
• Grandpa's BBQ ShopsupportingGTM or Marketing PartnerFamily-owned business producing handcrafted BBQ sauce with all proceeds donated to XP Family Support Group. Based in Minnesota.
• Coalition of Skin DiseasecoreStrategic or Co-development PartnerAffiliation with the Coalition of Skin Disease under the American Academy of Dermatology. Participates in Hill Day advocacy events with U.S. Senate and House Representatives.
• Enfants de la LunesupportingTechnology or IntegrationFrench organization providing Technical Service Ventilated Anti-UV Masks for XP patients. Orders through [email protected].
• SunsibilitysupportingOthersUK-based supplier of UV-protective clothing for adults and children. Contact: [email protected], Epsom Surrey.
• Medic Alert FoundationsupportingOthersMedical ID and emergency response organization providing 24/7 support for XP patients. Phone: 888-633-4298.
• International XP Partner OrganizationscoreStrategic or Co-development PartnerSix international XP partner organizations collaborating to share information and foster global awareness about XP.

Scale indicators10 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• Global Genes: Major rare disease advocacy and patient-support nonprofit competing for the same donor and grant dollars as XPFSG. Comparable in operating model (nonprofit, community-led, advocacy) but serves a much larger rare disease portfolio.
• National Organization for Rare Disorders (NORD): US-wide rare disease umbrella organization providing advocacy, research funding, and patient services. Overlaps with XPFSG's advocacy and family-support mission but at a much broader rare-disease scale.
• EveryLife Foundation for Rare Diseases: Rare disease public policy advocacy organization that participates in Hill Day events. Comparable to the advocacy and legislative engagement functions of XPFSG, particularly its Coalition of Skin Disease / Hill Day activities.
• American Academy of Dermatology Association: Professional dermatology association under which the Coalition of Skin Disease operates. Overlaps with XPFSG's medical advisory and advocacy activities and with development of condition-specific patient resources.
• American Cancer Society: Large US health nonprofit addressing cancer (a key downstream risk for XP patients). Overlaps tangentially in mission (XP patients have very high skin cancer risk) but at vastly different scale and disease scope.
• Skin Cancer Foundation: Nonprofit focused on skin cancer prevention, education, and UV protection awareness. Comparable in UV-safety education mission, though broader in audience than XPFSG's XP-specific focus.

Regional players

• Enfants de la Lune: France-based XP organization providing technical anti-UV masks and family support. Comparable XP-specific mission and is already an existing partner organization of XPFSG.
• Teddington Trust: UK-based XP charity providing practical support, UV protection guidance, and family connection services for XP patients. Directly comparable mission and programs to XPFSG, but serves primarily UK families.

Direct peers

• XP Society: Long-standing US-based nonprofit dedicated to supporting individuals and families affected by Xeroderma Pigmentosum. Highly comparable mission, target population, and product/program offerings (UV protection guidance, family support, advocacy).

Emerging players

• Make-A-Wish Foundation: Wish-granting nonprofit for children with critical illnesses including XP. Comparable in delivering experiences to XP-affected children (already a partner of XPFSG) but does not provide the disease-specific educational or UV protection resources XPFSG does.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/XPFSG
• Instagraminstagram.com/xpfamilysupportgroup
• LinkedInlinkedin.com/company/xp-family-support-group

Revenue estimate

Valuation estimate

Number of profiles

Profiles13 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about XP FAMILY SUPPORT GROUP