Cure Hereditary Hemorrhagic Telangiectasia

What Cure Hereditary Hemorrhagic Telangiectasia does

Cure Hereditary Hemorrhagic Telangiectasia (Cure HHT), legally HHT Foundation International, Inc., is a 501(c)(3) nonprofit patient advocacy organization founded in 1991 and headquartered in Monkton, Maryland. The organization serves individuals and families affected by Hereditary Hemorrhagic Telangiectasia (HHT), a rare genetic bleeding disorder affecting approximately 1.4 million people worldwide, of whom roughly 80% remain undiagnosed. Cure HHT addresses an average diagnostic delay of 27 years through education, awareness, research funding, advocacy, and coordination of access to expert multidisciplinary care.

Cure HHT's core technology and product portfolio centers on patient-facing digital tools (the My HHT Tracker mobile app, the HHT Connect patient registry), the CHORUS national clinical outcomes registry (published in Blood in 2026), the HHT BioBank, and the HHT Continuing Education Program for medical professionals. It certifies and supports a global network of more than 50 HHT Centers of Excellence providing multidisciplinary care across 12+ specialties. The organization convenes biennial international scientific conferences (SciCon), annual national patient and physician conferences, HHT Capitol Hill Day advocacy events, and HHT Awareness Month (June). It has invested in 28 research seed grants, supported the NIH-sponsored PATH trial of pomalidomide (published in NEJM), and played an active role in therapy development partnerships including Diagonal Therapeutics ($128M Series A) and Vaderis Therapeutics (FDA Fast Track designation for VAD044).

Cure HHT generates revenue through donations and fundraising (individual gifts, tribute, planned giving, and a transformational campaign), federal and government grants (notably $5,862,638 from HRSA plus $3M in additional federal appropriations), online store merchandise sales, and conference/event registration. Core services to patients are free; the model is freemium with voluntary contributions. The organization is governed by a board of directors, is not venture-backed, and recently expanded internationally with the launch of Cure HHT Canada as a related entity.

Name

Cure Hereditary Hemorrhagic Telangiectasia

Legal name

HHT Foundation International, Inc.

Website

https://curehht.org

Company type

Private

Founded year

1991

Operating status

Operating

Headcount range

11–50 employees

Short description

Cure Hereditary Hemorrhagic Telangiectasia (Cure HHT) is a 501(c)(3) patient advocacy organization founded in 1991 that serves individuals and families affected by HHT, a rare genetic bleeding disorder, through a global network of 50+ certified Centers of Excellence, patient registries, research funding, and education.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research Support

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

Keywords

• Patient advocacy nonprofit
• Rare disease support
• HHT research funding
• CME medical education
• Clinical registry services

Headquarters

HQ city

Monkton

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: Primary revenue stream from individual donations, tribute gifts, and transformational campaign contributions from patients, families, and supporters.
2. Federal and Government Grants: Funding from government sources including HRSA grants ($5,862,638 total) and federal appropriations for HHT Centers and research programs.
3. Product Sales: Revenue from online store selling merchandise, educational materials, and resources.
4. Planned Giving: Legacy giving programs including estate planning and planned giving options for long-term donor support.
5. Conference and Event Revenue: Registration fees for patient and physician conferences and scientific meetings.

Pricing tiers

Go-to-market motion3 records

Distribution channels4 records

Marketing channels9 records

Core offering

Cure HHT operates as a rare-disease patient advocacy organization that funds and accelerates research toward a cure for Hereditary Hemorrhagic Telangiectasia while delivering patient-facing tools (the My HHT Tracker app, the HHT Connect Registry, the Living with HHT handbook, and patient support) and provider-facing infrastructure (an HHT Centers of Excellence certification program and an HHT Continuing Education / CME program). It sustains operations through individual donations, federal grants, product sales, and event registrations.

Product overview

Cure HHT is a nonprofit patient advocacy organization (501(c)(3)) founded in 1991, dedicated to improving the lives of people affected by hereditary hemorrhagic telangiectasia. The organization offers a portfolio of patient-facing digital tools and educational resources including the My HHT Tracker App for symptom monitoring, HHT Connect Registry for research participation, and an HHT Continuing Education Program for medical professionals. They coordinate a global network of 50+ HHT Centers of Excellence through a certification program, maintain a comprehensive Resource Library, publish the Living with HHT book, and host international scientific and patient conferences. Cure HHT also runs awareness campaigns (notably HHT Awareness Month in June) and operates the Cure HHT Research Network and BioBank to accelerate scientific discovery.

Differentiator

Problem solved

Functional benefit

Products and services

• My HHT Tracker Free mobile application that lets HHT patients and families record daily symptoms, nosebleed events, treatments, and other clinical indicators to support self-management and contribute longitudinal data to the HHT Connect Registry; intended for diagnosed patients and caregivers.
• HHT Connect Patient Registry (CHORUS-powered) Longitudinal patient registry built on the CHORUS platform that allows HHT patients to consent to participation and provide outcomes data for use by researchers, clinicians, and the Cure HHT Research Network; intended for diagnosed patients and translational researchers.
• HHT Continuing Education Program (HHT CME/CE) Accredited continuing-medical-education program delivered through an online learning hub that gives healthcare professionals CME/CE credits for completing HHT-specific clinical modules; intended for treating physicians, nurses, and allied health professionals.
• HHT Centers of Excellence Certification Program Institutional certification program that designates qualified hospitals and academic medical centers as HHT Centers of Excellence, signaling that the site meets established multi-disciplinary standards for diagnosing and treating HHT; intended for healthcare institutions and referring providers.
• Living with HHT (Patient Handbook) Printed/published patient handbook that provides disease education, self-management guidance, and resource directories for HHT patients and families; sold through the organization's product-sales channel as a tangible patient-education deliverable.

Quantifiable outcome

• 43% increase in patients seen at Centers of Excellence
• +3 more outcomes

Named customers4 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature5 records

Partnerships

Eight partnerships are on record, tiered core and minor.

• University Hospitals of Leuven (UZ Leuven)coreStrategic or Co-development Partner · 20 May 2026University Hospitals of Leuven in Belgium achieved Cure HHT Center of Excellence designation, expanding access to expert HHT care in Europe. The center includes multidisciplinary team members across 12 specialties.
• Innovative Hematology (Indiana Hemophilia and Thrombosis Center)coreStrategic or Co-development Partner · 17 February 2025Innovative Hematology earned HHT Center of Excellence designation from Cure HHT. As one of the largest hemophilia treatment centers in the US, they provide unique multidisciplinary care including research initiatives for HHT patients.
• Vaderis TherapeuticscoreStrategic or Co-development Partner · 18 November 2024Cure HHT worked hand-in-hand with Vaderis leadership to encourage focus on HHT, inform trial design, and support recruitment for VAD044, an oral AKT inhibitor that received FDA Fast Track designation for HHT treatment. Cure HHT helped facilitate the company's entry into HHT drug development.
• Diagonal TherapeuticscoreStrategic or Co-development Partner · 3 April 2024Cure HHT partnered with Diagonal Therapeutics to help launch the biotech company focused on developing a curative HHT therapy. Cure HHT connected Diagonal with leading HHT scientists, met with venture capital firms to educate them on the disease burden, and helped secure $128 million in Series A financing. Cure HHT was instrumental in steering Diagonal's focus toward HHT and supporting their therapeutic development program DIAG723.
• Washington University School of Medicine in St. LouiscoreStrategic or Co-development PartnerWashington University School of Medicine provides accreditation for the HHT Continuing Education Program. Cure HHT's CME hub enables medical professionals to earn continuing education credits while learning about HHT diagnosis and treatment.
• Stanford Health CarecoreStrategic or Co-development PartnerStanford Health Care operates an HHT Center of Excellence certified by Cure HHT. The center, directed by Dr. Edda Spiekerkoetter, provides multidisciplinary care and conducts research on HHT treatment and pathophysiology.
• American Society of Hematology (ASH)minorStrategic or Co-development PartnerCure HHT's registry research from CHORUS was selected for oral presentation at ASH 2025 Annual Meeting, increasing HHT visibility in the hematology community and supporting research dissemination.
• Massachusetts General Hospital / Harvard Medical SchoolcoreStrategic or Co-development PartnerDr. Hanny Al-Samkari at MGH collaborated with Diagonal Therapeutics and Cure HHT on research demonstrating the economic and clinical burden of HHT, providing critical data for advocacy and therapy development.

Scale indicators10 records

Recent moves7 records

Expansion highlights6 records

Direct peers

• National Hemophilia Foundation: A major bleeding disorder patient advocacy nonprofit with research funding, treatment center network, and patient registry infrastructure. Directly comparable as a bleeding disorder-specific advocacy organization with similar structure (Centers of Care, registry, research grants).
• Tuberous Sclerosis Alliance: A rare genetic disorder patient advocacy organization with research funding, clinic network, and clinical guidelines. Directly comparable as a disease-specific nonprofit with similar mission, structure, and scale.
• Global Genes: A leading rare disease patient advocacy organization that operates a Foundation Alliance of which Cure HHT is a member. Directly comparable as a rare disease advocacy nonprofit providing community building, education, and research support tools.
• Aplastic Anemia & MDS International Foundation: A rare blood disorder patient advocacy organization with research funding and patient support. Comparable as a rare hematologic condition advocacy nonprofit with overlapping bleeding/hematology focus area.
• Children's Tumor Foundation: A rare genetic disorder (neurofibromatosis) patient advocacy organization funding research and supporting patients. Comparable as a disease-specific nonprofit with research grants, clinic network, and patient registry infrastructure.
• The Marfan Foundation: A genetic disorder patient advocacy nonprofit focused on Marfan syndrome and related conditions. Directly comparable as a single-disease nonprofit with Centers of Excellence network, research funding, patient registry, and clinical guidelines development.
• Pulmonary Hypertension Association: A rare disease patient advocacy organization with accredited care center network, research funding, and patient support programs. Comparable as a rare disease advocacy nonprofit with similar structure and Centers of Excellence model.

Broad incumbents

• National Organization for Rare Disorders (NORD): The leading umbrella advocacy organization for rare disease patients in the US. Directly comparable as a rare disease patient advocacy nonprofit that Cure HHT is a member of, providing grants, advocacy, research support, and policy work across 1,000+ rare diseases.
• Cystic Fibrosis Foundation: The largest single-disease patient advocacy organization in the US, with extensive research funding, care center network, and successful track record of catalyzing drug development (Vertex therapies). Comparable as a rare disease advocacy model demonstrating the upside of Cure HHT's strategic approach.
• American Thoracic Society: A major medical professional society covering pulmonary, critical care, and sleep medicine. Comparable as a partner organization for Cure HHT's HHT provider education and Centers of Excellence network, given HHT's pulmonary manifestations.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks6 records

Key highlights7 records

Customer concentration

• Xx.com/curehht
• YouTubeyoutube.com/@curehht
• Instagraminstagram.com/curehht
• LinkedInlinkedin.com/company/curehht
• Facebookfacebook.com/curehht

Compliance4 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 records

Subsidiaries1 record

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 Cure Hereditary Hemorrhagic Telangiectasia