The Global Foundation for Peroxisomal Disorders

What The Global Foundation for Peroxisomal Disorders does

The Global Foundation for Peroxisomal Disorders (GFPD) is a 501(c)(3) public charity incorporated in 2010 by parents Shannon Butalla and Melissa Gamble to serve individuals and families affected by peroxisomal disorders, including Peroxisome Biogenesis Disorder-Zellweger Spectrum Disorder (PBD-ZSD), Neonatal Adrenoleukodystrophy (NALD), Infantile Refsum Disease (IRD), D-Bifunctional Protein (DBP) Deficiency, and Acyl-CoA Oxidase (ACOX) Deficiency. The foundation is headquartered in Tulsa, Oklahoma, with a Delaware mailing address, and is governed by a Board of Directors that includes parents of affected children and members of the local Tulsa community. Its core programmatic outputs are a Patient Registry that connects nearly 800 families across 40 countries, a Family Directory, a Community Directory, family support services (care resources, bereavement support, equipment exchange, support groups), biennial International Family and Scientific Conferences, research fellowships, and advocacy events including Rare Disease Day, Day of Giving, Regional Meetups, Walk Run Ride, and Pause for the GFPD. A Medical and Scientific Advisory Board of leading researchers and physicians supports the mission.

The organization operates no commercial technology products; its Patient Registry functions as a relational database connecting affected families, researchers, and clinicians rather than as a software platform. Distribution is direct-to-family via the thegfpd.org website, e-newsletter, organic social media, support groups, conferences, and advocacy campaigns. Revenue is generated entirely through charitable donations and fundraising; the organization holds Charity Navigator's Four Star Rating and a GuideStar Transparency Seal, and is recognized by the Oklahoma Center for Nonprofits. Strategic partnerships include membership in the National Organization for Rare Disorders (NORD) and Global Genes' Rare Foundation Alliance, and a 2023 collaboration with Jackson Laboratory on an NIH-funded Mouse Mutant Peroxisome Research Resource.

Note on investment framing: as a 501(c)(3) public charity with no equity instrument, no disclosed revenue, no commercial revenue model, and no headcount disclosure, traditional PE/VC/M&A metrics do not apply. The analysis below treats the organization as a mission-driven nonprofit entity and assesses its operational scale, ecosystem position, and constituency momentum in lieu of revenue and growth multiples.

Name

The Global Foundation for Peroxisomal Disorders

Legal name

The Global Foundation for Peroxisomal Disorders

Website

https://thegfpd.org

Company type

Private

Founded year

2010

Operating status

Operating

Headcount range

1–10 employees

Short description

The Global Foundation for Peroxisomal Disorders is a 501(c)(3) public charity that connects nearly 800 families across 40 countries affected by peroxisomal disorders through a patient registry, support services, biennial scientific conferences, research funding, and advocacy.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Rare disease advocacy
• Patient registry services
• Nonprofit research funding
• Family support services
• Scientific conferences

Headquarters

HQ city

Tulsa

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Others

Distribution channels1 record

Marketing channels6 records

Core offering

The Global Foundation for Peroxisomal Disorders (GFPD) is a 501(c)(3) nonprofit foundation that maintains a global patient registry connecting nearly 800 families from 40 countries affected by peroxisomal disorders. It funds peroxisomal disorder research and fellowships, hosts biennial Family and Scientific Conferences, provides family support services including bereavement resources, equipment exchange, and support groups, and runs advocacy campaigns such as Rare Disease Day, Day of Giving, and Walk Run Ride to raise awareness for these rare conditions.

Product overview

The Global Foundation for Peroxisomal Disorders is a non-profit organization offering a suite of support services and programs for families affected by peroxisomal disorders. The core offerings include the Patient Registry (connecting nearly 800 families from 40 countries), Family Directory, Community Directory, and Family Support Services (care resources, bereavement support, equipment exchange, support groups). Additional programs include biennial International Family and Scientific Conferences, Research and Fellowships funding, and advocacy events such as Rare Disease Day, Day of Giving, Regional Meetups, Walk Run Ride, and Pause for the GFPD. The organization does not offer technology products in the traditional sense but provides these programs as services to the rare disease community.

Differentiator

Problem solved

Functional benefit

Products and services

• GFPD Patient Registry A database connecting nearly 800 families from 40 countries affected by peroxisomal disorders, enabling research and community support. It is offered free of charge to families affected by PBD-ZSD and related single enzyme peroxisomal disorders.
• Family Directory A comprehensive directory of families and individuals with peroxisomal disorders, enabling peer connection and mutual support among affected families. Grown from 48 families in 2010 to over 600 families from 40+ countries.
• Community Directory A directory for professionals, extended family, and friends to stay connected with GFPD updates about support, research, advocacy, and events. Extends the foundation's reach beyond directly affected families to their broader support networks.
• Family Support Services Care resources, bereavement support, equipment exchange, and support groups for families affected by peroxisomal disorders. Includes a Letter to Newly Diagnosed Families, GFPD Support Groups, Bereavement Resources, and the Equipment Exchange program.
• International Family and Scientific Conferences Biennial conferences bringing together families and professionals from around the world to meet and collaborate on improving the lives of patients with peroxisomal disorders. Combines patient community-building with scientific exchange.
• Research and Fellowships A research funding program supporting fellowships and current research initiatives for peroxisomal disorder treatments. Includes Clinical Trials information, Voice of the Patient Report, Scholarly Articles, Current Research, and Fellowships.
• Advocacy Events Advocacy events and awareness campaigns including Rare Disease Day, Day of Giving, Regional Meetups, Walk Run Ride, and Pause with the GFPD. The Pause campaign and legislative advocacy are designed to raise public and policy awareness about peroxisomal disorders.

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Jackson LaboratorycoreStrategic or Co-development Partner · 5 December 2023Jackson Laboratory Director Aamir Zuberi, Ph.D., along with co-principal investigators, received an NIH grant establishing the Mouse Mutant Peroxisome Research Resource in collaboration with the GFPD community
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerGFPD is a member organization of NORD, providing access to rare disease advocacy networks, resources, and collaborative opportunities within the rare disease community
• Global GenescoreStrategic or Co-development PartnerGFPD is a Rare Foundation Alliance member of Global Genes, connecting to patient advocacy resources and rare disease community support networks
• Oklahoma Center for NonprofitsminorStrategic or Co-development PartnerGFPD is recognized by the Oklahoma Center for Nonprofits as a compliant nonprofit organization meeting standards for accountability and effectiveness

Scale indicators4 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy organization representing approximately 300 rare disease patient organizations, including GFPD as a member. Operates the same patient registry, advocacy, and rare-disease support model across a much broader disease portfolio.
• Global Genes: All rare disease advocacy and education organization that runs the Rare Foundation Alliance of which GFPD is a member. Offers shared toolkits, RARE disease conferences, and patient advocacy capacity-building that GFPD leverages.

Direct peers

• Cure SMA: Leading rare disease foundation for Spinal Muscular Atrophy that scaled from a small parent support network to a multimillion-dollar research-funding organization. Provides a template for how GFPD's registry and conferences could evolve into a high-impact therapy accelerator.
• FOD Family Support Group: Foundation supporting families affected by Fatty Acid Oxidation Disorders, a class of inherited metabolic disorders similar in mechanism and rarity profile to peroxisomal disorders. Operates family directory, scientific conferences, and newborn screening advocacy.
• PXE International: Foundation for Pseudoxanthoma Elasticum, an ultra-rare genetic disorder. Maintains a patient registry and has driven research funding, gene discovery, and clinical guidelines in a similarly small patient population.
• NBIA Disorders Association: Foundation supporting patients with Neurodegeneration with Brain Iron Accumulation, a similarly ultra-rare neurological disorder. Runs an analogous patient registry, scientific advisory board, biennial family/scientific conferences, and research grant program.
• United Leukodystrophy Foundation: Disease-specific nonprofit foundation supporting patients with leukodystrophies, including peroxisome biogenesis disorders (Zellweger spectrum). Operates patient registry, family conferences, and research funding programs in an overlapping disease category.
• AHC Foundation: Foundation supporting patients with Alternating Hemiplegia of Childhood, an ultra-rare neurological disorder with comparable patient population size, registry operations, and family support structure.

Others

• Child Neurology Foundation: Foundation connecting families of children with neurological conditions to specialists and resources, including leukodystrophies and peroxisomal disorders. Operates a transitional care model that overlaps with GFPD's support mission.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/thegfpd
• Facebookfacebook.com/TheGFPD
• LinkedInlinkedin.com/company/thegfpd

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 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 The Global Foundation for Peroxisomal Disorders