HUNTER SYNDROME FOUNDATION

What HUNTER SYNDROME FOUNDATION does

The Hunter Syndrome Foundation is a U.S. 501(c)(3) nonprofit corporation (IRS Tax ID 46-4296623) founded in 2013 by parents of children affected by Hunter Syndrome, also known as Mucopolysaccharidosis Type II (MPS II). Headquartered at PO BOX #203, Prosper, Texas (Dallas-Fort Worth area), the organization operates with 1-10 employees and pursues a three-part mission: funding research into treatments and cures, providing emotional and practical support to affected families, and raising public awareness of this rare, progressive, life-limiting genetic disorder that affects an estimated 1 in 100,000 to 1 in 150,000 male births. There is currently no cure for MPS II.

The foundation does not develop or sell products or services. Its revenue model is donation-based, accepting contributions through a PayPal hosted button and mail-in donations, with revenue figures not publicly disclosed. Go-to-market is community-led: the foundation relies on a WordPress blog, a Facebook page with roughly 33 followers, and an email newsletter with approximately 34 subscribers to reach families and drive donations. It maintains a single mailing-office location and has no identified subsidiaries, funding rounds, or institutional investors.

The foundation operates within a coordinated network of peer rare-disease nonprofits, holding mutual partnerships with Project Alive, MPS SuperHero Foundation, Sock-it 2 Hunter Syndrome Foundation, and the MPS Society, plus an educational/information relationship with Mayo Clinic. Its differentiation rests on its origin as the only Hunter-Syndrome-specific foundation founded by parents of affected children, providing lived-experience credibility that larger, more generalist MPS organizations do not match.

Name

HUNTER SYNDROME FOUNDATION

Legal name

Hunter Syndrome Foundation

Website

https://huntersyndromefoundation.org

Company type

Private

Founded year

2013

Operating status

Operating

Headcount range

1–10 employees

Short description

The Hunter Syndrome Foundation is a U.S. 501(c)(3) nonprofit founded in 2013 by affected parents to fund research, support families, and raise awareness for Hunter Syndrome (MPS II), a rare genetic disorder affecting 1 in 100,000-150,000 males.

Ownership category

akta.pro rank

Product category

Rare Disease Nonprofit Foundation

NAICS

Voluntary Health Organizations (813212), Grantmaking Foundations (813211), Child and Youth Services (624110)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Family Offices & Philanthropic Advisors (Grantmaking) (BPAGAKAD)

Keywords

• Rare disease research
• MPS II support
• Family advocacy
• Nonprofit foundation
• Genetic disorder awareness

Headquarters

HQ city

Prosper

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: The foundation raises funds through donations via PayPal and mail-in donations to support research for Hunter Syndrome treatments and provide family support services.

Go-to-market motion1 record

Marketing channels3 records

Core offering

The Hunter Syndrome Foundation raises donations to fund research toward treatments and a cure for Hunter Syndrome (MPS II), provides emotional and practical support to families affected by the disease, and runs awareness-building outreach through its website, Facebook page, and email newsletter. As a 501(c)(3) nonprofit, it does not sell commercial products or services; its "offering" is the charitable mission itself, channeled through community education and donor stewardship.

Product overview

The Hunter Syndrome Foundation is a U.S. 501(c)(3) non-profit organization (IRS Tax ID# 46-4296623) founded in 2013 by parents of children affected by Hunter Syndrome. The Foundation does not offer commercial products or services but rather serves as an advocacy and support organization dedicated to funding research for treatments, providing support to affected families, and raising public awareness of Hunter Syndrome (Mucopolysaccharidosis Type II / MPS II). The organization operates solely as a charitable foundation facilitating donations and connecting stakeholders with resources and related organizations.

Differentiator

Problem solved

Functional benefit

Quantifiable outcome

• Founded in 2013 by parents to address the urgent need for research funding and family support for this rare disease.

Segments1 record

Ideal customer profiles2 records

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Five partnerships are on record, tiered core and minor.

• Project AlivecoreStrategic or Co-development PartnerA nonprofit organization dedicated to finding a cure for Hunter Syndrome through research and advocacy. They share the mission of funding research and raising awareness for this rare disease.
• MPS SuperHero FoundationcoreStrategic or Co-development PartnerA South Florida parent-led 501(c)(3) nonprofit organization established in 2016, committed to raising funds to cure Hunter Syndrome. Shares the foundation's mission of research funding and family support.
• Sock-it 2 Hunter Syndrome FoundationminorStrategic or Co-development PartnerA foundation dedicated to fundraising for research and development towards finding a cure for Hunter Syndrome. Works toward the same goal of funding research for treatments.
• MPS SocietycoreStrategic or Co-development PartnerProvides support to families, supports research, and advocates for MPS and related disorders. Located at P.O. Box 14686, Durham, NC 27709-4686 with toll-free line 877.MPS.1001.
• Mayo ClinicminorOthersProvides medical information about MPS conditions including Hunter Syndrome on their website, helping to educate patients and families about the disease.

Scale indicators3 records

Recent moves3 records

Expansion highlights2 records

Direct peers

• Sock-it 2 Hunter Syndrome Foundation: A foundation dedicated to fundraising for research toward a cure for Hunter Syndrome. Operates with the same narrow disease focus and competes for research donations from the same affected families.
• Project Alive: A nonprofit organization dedicated to finding a cure for Hunter Syndrome through research and advocacy. Directly competes with Hunter Syndrome Foundation for Hunter-Syndrome-specific research donations and affected-family engagement.
• MPS SuperHero Foundation: A South Florida parent-led 501(c)(3) nonprofit established in 2016 committed to raising funds to cure Hunter Syndrome. Shares the same parent-led, disease-specific research-funding model and competes for the same donor pool.
• National MPS Society: A larger, more established nonprofit supporting all MPS disorders (including Hunter Syndrome) through research funding, family support, and advocacy. A direct peer that competes for the same donations but with broader disease scope and longer operating history.

Emerging players

• Cure SMA: A rare-disease nonprofit focused on spinal muscular atrophy that combines research funding, family support, and advocacy. Operates a more mature version of the same disease-specific nonprofit model that Hunter Syndrome Foundation pursues.

Broad incumbents

• National Organization for Rare Disorders (NORD): A broad umbrella organization representing the rare-disease community across 7,000+ conditions. While not Hunter Syndrome-specific, it is a comparable patient-advocacy nonprofit that competes for institutional donor attention in the rare-disease space.
• EveryLife Foundation for Rare Diseases: A rare-disease advocacy nonprofit focused on policy and federal funding. An adjacent peer that operates in the broader rare-disease ecosystem with a public-policy focus rather than disease-specific research funding.
• Global Genes: A rare-disease advocacy organization that connects and empowers patient communities. Comparable in serving rare-disease families and driving research funding, but operates at a much larger scope across many conditions.

Others

• Mayo Clinic: An academic medical center that provides clinical care and research for MPS disorders including Hunter Syndrome. Functions as an educational/information resource partner to Hunter Syndrome Foundation and a recipient channel for patient referrals.

Regional players

• MPS Society (UK): A UK-based charity supporting individuals and families affected by MPS and related diseases including Hunter Syndrome. Comparable mission and service model, but serves a primarily UK/European audience.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks6 records

Key highlights5 records

Customer concentration

• Facebookfacebook.com/591344167598784
• LinkedInlinkedin.com/company/hunter-syndrome-foundation

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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