XLH Network

What XLH Network does

The XLH Network is a 501(c)(3) tax-exempt nonprofit patient support organization founded in 1996 in Albany, New York that provides education, resources, and community support for individuals and families affected by X-Linked Hypophosphatemia (XLH) and related phosphate-wasting disorders including ADHR, TIO, and ARHR. It is self-described as the first organization in the world specifically dedicated to XLH and operates on a community-led go-to-market model reaching a global membership of thousands of affected individuals, family members, and medical professionals. Its core product surface is a portfolio of interconnected services rather than a unified software platform: a searchable Doctor Database spanning multiple specialties and U.S. states, a Resources Library (Transition Toolkit, Rare Disease Alert Card, dental resources, clinical trial information), monthly Zoom-based Peer Support Groups (Living with XLH, Caregivers, Newly-Diagnosed), the annual XLH Day educational conference (XLH Day 2026 is scheduled in Indianapolis), the annual XLH Kids Camp held at the Center for Courageous Kids in Scottsville, Kentucky, a quarterly newsletter, and published assets including the Voice of the Patient Report and the book "Weak Bones, Strong Wills." There is no proprietary technology platform, mobile app, or API; operations are supported by a 1–10 person staff under Executive Director Susan Faitos and an eight-member Scientific Advisory Board drawn from Yale School of Medicine, Indiana University School of Medicine, University of Virginia, NYU, and Quinnipiac.

The business model is entirely donation-driven. Revenue is generated through charitable contributions via Zeffy, PayPal, Venmo, credit card, electronic stock transfers held at Wells Fargo Advisors, employer matching gift programs, planned giving through wills, donations of airline miles and hotel points, and hosted community fundraisers. The organization reports that 80% of donations go toward programs for education, outreach, and advocacy. Distribution is primarily digital through its website (xlhnetwork.org), with active Facebook and Instagram presences, and no products or services are sold. The organization is an affiliate of Global Genes and NORD, a member of the International XLH Alliance, and maintains strategic event partnerships with Kyowa Kirin and historical ties to Ultragenyx. Strategic research and clinical relationships with the Yale Center for X-Linked Hypophosphatemia and Indiana University School of Medicine anchor the organization to the field's leading investigators, including the lab that discovered FGF23 and led to the first new XLH therapy (burosumab/Crysvita) in over 30 years.

Name

XLH Network

Legal name

The XLH Network, Inc.

Website

https://xlhnetwork.org

Company type

Private

Founded year

1996

Operating status

Operating

Headcount range

1–10 employees

Short description

The XLH Network is a 501(c)(3) nonprofit founded in 1996 that delivers education, peer support, resources, and advocacy for individuals and families affected by X-Linked Hypophosphatemia and related phosphate-wasting disorders worldwide.

Ownership category

akta.pro rank

Headquarters

HQ city

Albany

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Contributions: The XLH Network generates revenue primarily through charitable donations from individuals, including one-time and recurring contributions via their website donation platform (Zeffy), PayPal, Venmo, and credit card. The organization is a 501(c)(3) tax-exempt charity, making all donations tax deductible.
2. Stock Gifts: Electronic or DTC transfer of stock through a broker can be made through Wells Fargo Advisors Financial Network account held by the XLH Network.
3. Employer Matching Gifts: Many employers have programs to match donations made by their employees. The organization encourages donors to check with their employer for matching gift programs.
4. Planned Giving: Donors can include The XLH Network as a beneficiary in their will as a planned giving option.
5. Airline Miles and Hotel Points: Donations of airline miles or hotel points help organization representatives attend conferences to raise awareness and educate health professionals about XLH.
6. Hosted Fundraisers: The organization accepts hosted fundraisers from community members to build community strength.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels7 records

Core offering

The XLH Network is a 501(c)(3) nonprofit patient support organization providing education, resources, and community support for individuals and families affected by X-Linked Hypophosphatemia (XLH) and related phosphate-wasting disorders (ADHR, TIO, ARHR). Its offerings center on a searchable Doctor Database of XLH-experienced specialists, a Resources Library with educational toolkits and clinical trial information, monthly peer support groups, annual educational conferences (XLH Day) and family camps (XLH Kids Camp), and advocacy resources aimed at improving diagnosis, treatment access, and quality of life.

Product overview

The XLH Network is a worldwide non-profit patient support organization dedicated to X-Linked Hypophosphatemia (XLH). Rather than a unified software product, the organization provides a portfolio of interconnected services: a Doctor Database for finding XLH-experienced specialists nationwide; a Resources Library including toolkits, dental guides, and clinical trial information; Peer Support Groups (Living with XLH, Caregivers, and Newly-Diagnosed) meeting via Zoom; annual events including XLH Day conferences and XLH Kids Camp; Quarterly Newsletters; and published materials like the Voice of the Patient Report and the book 'Weak Bones, Strong Wills.' The organization fosters community, provides education, and advocates for those affected by XLH and related phosphate-wasting disorders.

Differentiator

Problem solved

Functional benefit

Products and services

• Doctor Database
• Resources Library
• Peer Support Groups
• XLH Day Annual Conference
• XLH Kids Camp
• Quarterly Newsletter
• Weak Bones, Strong Wills: The Stories of XLH
• Voice of the Patient Report
• Advocacy Toolkit

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Eight partnerships are on record, tiered core, major and minor.

• Global GenescoreOthersThe XLH Network is a proud affiliate of Global Genes, a leading rare disease advocacy organization. This affiliation provides visibility, resources, and connections within the broader rare disease community.
• NORD (National Organization for Rare Disorders)coreOthersThe XLH Network is a proud affiliate of NORD, a 40th anniversary member organization. This affiliation connects the network with the broader rare disease advocacy community and provides additional credibility and resources.
• International XLH AlliancecoreOthersThe XLH Network works with the International XLH Alliance, a global coalition of XLH patient organizations, to coordinate international efforts and resources for the XLH community.
• Kyowa KirinmajorStrategic or Co-development PartnerKyowa Kirin sponsors and hosts virtual events with the XLH Network, including events like 'Navigating XLH and the Transition to Adult Care'. Kyowa Kirin is a pharmaceutical company developing treatments for rare diseases including XLH.
• Yale Center for X-Linked HypophosphatemiamajorStrategic or Co-development PartnerThe Yale Center for X-Linked Hypophosphatemia, founded by Dr. Thomas Carpenter, is a key clinical and research partner. Elizabeth Olea serves as Senior Clinical Research Associate at Yale and founded XLH Day in 2011.
• Indiana University School of MedicinemajorStrategic or Co-development PartnerIndiana University School of Medicine, led by Dr. Erik Imel and Dr. Michael Econs, conducts clinical research and trials for XLH. Dr. Econs' lab discovered FGF23, leading to the first new therapy in over 30 years for XLH.
• Center for Courageous KidsmajorStrategic or Co-development PartnerThe Center for Courageous Kids in Scottsville, Kentucky hosts the annual XLH Kids Camp, providing a safe recreational environment for children with XLH.
• UltragenyxminorGTM or Marketing PartnerCarrie Stearns, a board member, previously worked at Ultragenyx as Marketing Director and helped build the company's XLH patient speaker program in 2018. Ultragenyx develops treatments for rare diseases.

Scale indicators4 records

Recent moves7 records

Expansion highlights6 records

Broad incumbents

• American Bone Health: American Bone Health is a U.S. nonprofit focused on education, screening, and advocacy for bone health. Comparable as a broader bone-health advocacy organization with overlapping scientific advisors and educational programming, but not condition-specific to XLH.
• National Organization for Rare Disorders (NORD): NORD is the largest U.S. rare-disease umbrella advocacy organization. XLH Network is an affiliate of NORD. Comparable as a peer only at the umbrella/advocacy level — NORD serves all rare diseases while XLH Network focuses exclusively on XLH and related phosphate-wasting disorders.
• Global Genes: Global Genes is a leading rare-disease advocacy organization. XLH Network is a proud affiliate of Global Genes. It is a broader incumbent in the rare-disease advocacy space rather than a single-condition specialist.
• Osteogenesis Imperfecta Foundation (OIF): OIF is a long-standing U.S. patient advocacy nonprofit for people with Osteogenesis Imperfecta, a rare genetic bone disorder. Comparable as a rare-bone-disease patient advocacy organization with similar programming (peer support, conferences, scientific advisors, pharma partnerships).

Direct peers

• Children's Craniofacial Association: Children's Craniofacial Association is a U.S. nonprofit providing family-to-family support for children with craniofacial conditions. Comparable as a small rare-condition patient advocacy nonprofit with peer-to-peer support, family retreats, and donations-funded programming.
• Soft Bones (Hypophosphatasia): Soft Bones is a U.S. patient advocacy nonprofit serving people affected by Hypophosphatasia (HPP), another rare phosphate/metabolic bone disorder. It is the closest direct analog to XLH Network in mission, scale, and operating model — small nonprofit, donations-funded, doctor directory, peer support, scientific advisory board, pharma-sponsored education.
• The MAGIC Foundation: The MAGIC Foundation is a U.S. nonprofit providing education, support, and resources for families affected by a variety of rare endocrine and growth disorders. Comparable as a small-condition-specific rare-disease patient advocacy nonprofit with a similar donation-based model, scientific advisory board, and conference programming.

Others

• XLH Alliance International: International XLH Alliance is the global coalition of XLH patient organizations that XLH Network actively partners with. Comparable as a peer-ecosystem participant rather than a direct competitor; rather than competing for members, it coordinates international advocacy and educational resources for the XLH community.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/xlhnetwork
• Instagraminstagram.com/xlhnetwork
• LinkedInlinkedin.com/company/xlhnetwork

Revenue estimate

Valuation estimate

Number of profiles

Profiles22 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about XLH Network