Glanzmann's Research Foundation, Inc.

What Glanzmann's Research Foundation, Inc. does

Glanzmann's Research Foundation, Inc. (GRF) is a 501(c)(3) non-profit organization founded in 2001 by Helen Smith after her daughter Julia was diagnosed with Glanzmann Thrombasthenia (GT), an ultra-rare inherited platelet disorder affecting approximately one in one million people (around 200 known cases worldwide at the time of founding). Headquartered in Augusta, United States, the foundation operates with 1-10 employees and is governed by a board composed largely of GT patients and caregivers. Its mission is to fund research toward a cure while providing information, support, and community connection to patients, families, and healthcare providers worldwide, including members across the U.S., Australia, France, Belgium, Bangladesh, Italy, and Brazil.

The foundation's core product is its website (curegt.org), which functions as the primary online hub for the GT community. The platform bundles a comprehensive set of disease-specific resources: an FAQ, a medical glossary, medication and remedies guides, a women's health resource, a classroom planning guide for schools, nutrition and lifestyle advice, scholarship listings, and a "New Doctor Information" directory for finding hematologists and hemophilia treatment centers. A "Faces of GT" section publishes patient stories, and a community blog was added in February 2025. Distribution extends to a Facebook support group, a YouTube channel, a Spotify playlist, and the annual GRF Educational Conference (first held July 26-29, 2023 in Somerville, Massachusetts). The foundation does not develop proprietary technology; its research arm consists of funding Dr. David Wilcox's gene therapy work at the Medical College of Wisconsin, with extensions into the Versiti Blood Center of Wisconsin, the Children's Research Institute, and Dr. Wilcox's company Platelet Targeted Therapeutics.

GRF's business model is donation- and grant-driven, consistent with its 501(c)(3) status. Revenue streams include individual donations, merchandise sales via Bonfire, and grants such as the 2024 RAREis Global Advocate Grant from Amgen. All educational content, support resources, and community services are provided free of charge. The historical fundraising benchmark is founder Helen Smith's cumulative $300,000+ raised for research through advocacy and events. Following Helen Smith's passing in 2019, leadership continuity was maintained by Taylor Burtz (Helen's older daughter); the foundation is now led by President Peter Zdziarski, with Melissa Zdziarski serving as Support Services Director. No revenue, budget, or Form 990 figures are publicly disclosed.

Name

Glanzmann's Research Foundation, Inc.

Legal name

Glanzmann's Research Foundation, Inc.

Website

https://www.curegt.org

Company type

Private

Founded year

2001

Operating status

Operating

Headcount range

1–10 employees

Short description

Glanzmann's Research Foundation is a 501(c)(3) non-profit founded in 2001 that funds research and provides education, resources, and community support for patients, families, and healthcare providers affected by Glanzmann Thrombasthenia, an ultra-rare inherited bleeding disorder.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy & Support

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

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

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Rare disease advocacy
• Patient support services
• Bleeding disorder research
• Non-profit foundation
• Community health education

Headquarters

HQ city

Augusta

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, Technology or R&D, Others

Revenue model

1. Donations and Contributions: As a 501(c)(3) non-profit organization, Glanzmann's Research Foundation relies primarily on donations from individuals, families, and supporters to fund its operations and research initiatives.
2. GRF Merchandise Store: The foundation sells GRF merchandise through Bonfire to raise funds for research efforts.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

Glanzmann's Research Foundation operates a 501(c)(3) non-profit patient-advocacy platform centered on Glanzmann Thrombasthenia (GT), an ultra-rare inherited bleeding disorder. Its core offering is a comprehensive website (curegt.org) providing disease information, FAQs, glossaries, medication/remedy guides, women's health resources, classroom plans, scholarship listings, and doctor-finding assistance to GT patients, families, and healthcare providers. The foundation complements its digital resources with peer-support communities (Facebook), an annual educational conference, research funding (notably gene therapy research led by Dr. David Wilcox), and advocacy campaigns such as National Glanzmann's Thrombasthenia Awareness Day.

Product overview

Glanzmann's Research Foundation operates as a 501(c)(3) non-profit organization running a comprehensive patient education and support platform centered around Glanzmann Thrombasthenia. The core offering is the organization's website (curegt.org), which serves as a central hub providing information about GT, a rare inherited bleeding disorder. The platform includes multiple interconnected resources: an extensive FAQ and glossary for patient education, a women's health section addressing menstrual and reproductive health concerns, a classroom plan guide for parents and schools, a medication and remedies database, a research articles repository featuring Dr. David Wilcox's gene therapy work, a Faces of GT community stories section, and a peer support community via Facebook. The organization also hosts annual educational conferences and maintains YouTube, Facebook, and Spotify social presences for community engagement.

Differentiator

Problem solved

Functional benefit

Products and services

• Glanzmann's Research Foundation Website (curegt.org) A comprehensive online resource platform providing information, support, and community connections for patients, families, and healthcare providers affected by Glanzmann Thrombasthenia (GT), a rare inherited blood clotting disorder.
• GT Support Community (Facebook Group) Facebook-based peer support group connecting GT patients and families for shared experiences, treatment tips, and emotional support.
• GRF Educational Conference Annual educational conference series bringing together GT patients, families, researchers, and healthcare providers for education and community building.
• GRF Community Blog A blog section on the foundation's website serving as a platform for individuals living with Glanzmann Thrombasthenia to share their stories, strength, talent, and experiences.
• GRF Merchandise Store GRF-branded merchandise sold via Bonfire to raise funds for GT research.

Quantifiable outcome

• $300,000+ raised for research
• +1 more outcomes

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

Five partnerships are on record, tiered core and minor.

• Medical College of WisconsincoreStrategic or Co-development PartnerThe foundation works closely with Dr. David Wilcox at the Medical College of Wisconsin, who spearheads research aimed at finding a cure for Glanzmann Thrombasthenia. Helen Smith collaborated with Dr. Wilcox to support research efforts, and the foundation continues to fund his gene therapy research.
• Blood Research Institute (Versiti Blood Center of Wisconsin)coreStrategic or Co-development PartnerDr. David Wilcox serves as Adjunct Investigator at the Blood Research Institute of the Versiti Blood Center of Wisconsin, where he conducts platelet-focused research relevant to GT treatment development.
• Children's Research Institute at Children's Hospital of WisconsincoreStrategic or Co-development PartnerDr. David Wilcox serves as Investigator at the Children's Research Institute, conducting pediatric hematology research including GT gene therapy studies.
• Platelet Targeted TherapeuticscoreStrategic or Co-development PartnerDr. David Wilcox is President of Platelet Targeted Therapeutics, a company dedicated to developing unique platelet-based therapies for GT and other genetic disorders. The foundation supports this research effort.
• U.S. Congress and SenateminorStrategic or Co-development PartnerHelen Smith's advocacy efforts helped secure recognition of National Glanzmann's Thrombasthenia Awareness Day in Congress and the Senate.

Scale indicators4 records

Recent moves5 records

Expansion highlights5 records

Broad incumbents

• National Hemophilia Foundation: NHF is the largest U.S. bleeding-disorder advocacy organization, historically focused on hemophilia but increasingly extending coverage to rare platelet disorders like Glanzmann Thrombasthenia. It competes for the same donor pool, pharma sponsorships, and patient mindshare that GRF relies on.
• Hemophilia Federation of America: HFA is a U.S. community-based bleeding-disorder organization serving patients across the bleeding disorder spectrum, including rare platelet conditions. It represents a broader, better-resourced alternative that could absorb GT patient support and donor funding.
• World Federation of Hemophilia: WFH is a global bleeding-disorder umbrella organization that addresses hemophilia and other rare coagulation and platelet disorders, including GT. Its international reach and institutional relationships with hemophilia treatment centers overlap directly with GRF's global community mission.
• National Organization for Rare Disorders (NORD): NORD is the largest U.S. umbrella organization for rare diseases and provides advocacy, research grants, and patient services that overlap with GRF's mission. NORD also operates disease-specific patient registries that could subsume GT patient data collection.

Direct peers

• Platelet Disorder Support Association: PDSA is a patient advocacy organization focused on immune thrombocytopenia (ITP) and other platelet disorders. Like GRF, it serves a small platelet-disorder patient community with education, peer support, and research funding, and operates with a similarly lean, donation-funded nonprofit model.
• Cooley's Anemia Foundation: Cooley's Anemia Foundation is a small, ultra-rare disease-specific nonprofit supporting patients with thalassemia, another rare inherited blood disorder. It mirrors GRF's model of disease-specific patient support, research funding, and educational conferences for a similarly small patient population.
• Aplastic Anemia and MDS International Foundation: AAMDS supports patients with rare bone marrow failure diseases through education, peer support, and research funding. Like GRF, it operates a small-team nonprofit model focused on an ultra-rare disease community and serves as a comparable rare disease nonprofit archetype.
• American Thrombosis and Hemostasis Network (ATHN): ATHN is a nonprofit dedicated to advancing research and care for individuals with bleeding and clotting disorders through a national patient data infrastructure. It serves a similar mission as GRF around rare bleeding disorders and could become a competing registry/research partner for GT.

Emerging players

• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a rare disease policy and advocacy organization that represents the collective interests of rare disease patient groups including small foundations like GRF. It provides shared policy infrastructure and legislative advocacy that GRF benefits from but does not compete with directly.

Others

• National Blood Clot Alliance: National Blood Clot Alliance is a patient advocacy organization addressing thrombosis and clotting disorders. While focused on clotting rather than bleeding, it sits in the same hematology advocacy space and shares overlapping donor audiences, healthcare provider networks, and research partnerships relevant to GRF.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@glanzmannthrombasthenia
• Facebookfacebook.com/GlanzmannsResearchFoundation
• LinkedInlinkedin.com/company/glanzmanns-research-foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles8 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Glanzmann's Research Foundation, Inc.