The EHE Foundation
The EHE Foundation is a 501(c)(3) nonprofit founded in 2015 that operates the EHE Global Patient Registry, EHE Biobank, and annual EHE 360 Global Conference to advance research and support patients with epithelioid hemangioendothelioma, an ultra-rare sarcoma affecting fewer than 1 in 1 million people worldwide.
- Company typePrivate
- Founded2015
- HeadquartersGreen Bay, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What The EHE Foundation does
The EHE Foundation is a 501(c)(3) nonprofit organization founded in 2015 and headquartered in Hobart, Wisconsin (Green Bay area), dedicated to finding treatments and a cure for epithelioid hemangioendothelioma, an ultra-rare vascular sarcoma affecting fewer than 1 in 1 million people. It serves a global community of EHE patients, caregivers, researchers, and clinicians across at least 19 countries and five continents, and operates with a lean distributed team of 1-10 staff under Executive Director Denise Robinson.
The foundation's core offerings combine patient services with proprietary research infrastructure. Its technology stack centers on the EHE Global Patient Registry, hosted on the National Organization for Rare Disorders' IAMRARE platform, which collects standardized natural history data, and the EHE Biobank (established 2020), which distributes tissue and biospecimens to qualified researchers. Structured clinical data is enabled through a partnership with xCures. Patient-facing services include virtual support groups, a provider directory, clinical trial listings, the EHE Library of approximately 200 EHE-specific publications, and the monthly EHE 360 Connect webinar series, all provided free of charge. The annual EHE 360 Global Conference convenes the international community; the 2026 edition drew 187 registrants from 19 countries.
The foundation's business model is donation-driven rather than revenue-driven, consistent with its 501(c)(3) status. Funding is generated through individual donations processed via the Zeffy platform, the annual EHE Fun Run & Walk (per-registrant fees of $45 US / $65 international), corporate sponsorships (including Aadi Bioscience and SpringWorks Therapeutics), EHE Awareness Month campaigns, and grants. The foundation channels donor funds into a Research Grants Program that has committed over $2 million cumulatively to academic collaborators including Memorial Sloan Kettering, Cleveland Clinic, Albany Medical College, MIT Koch Institute, and Istituto Nazionale dei Tumori, and into operational infrastructure that supports a co-funded Department of Defense rare-cancer drug-target discovery platform and SARC's SARC046 Phase 2 clinical trial.
The EHE Foundation firmographics
Firmographics- Name
- The EHE Foundation
- Legal name
- EHE Foundation
- Website
- https://fightehe.org
- Company type
- Private
- Founded year
- 2015
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The EHE Foundation is a 501(c)(3) nonprofit founded in 2015 that operates the EHE Global Patient Registry, EHE Biobank, and annual EHE 360 Global Conference to advance research and support patients with epithelioid hemangioendothelioma, an ultra-rare sarcoma affecting fewer than 1 in 1 million people worldwide.
- Ownership category
- akta.pro rank
The EHE Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Voluntary Health Organizations (813212), Grantmaking and Giving Services (8132)
- SIC
- Services-Health Services (8000)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where The EHE Foundation is headquartered
LocationHeadquarters
- HQ city
- Green Bay
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
The EHE Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Fundraising: The EHE Foundation generates revenue primarily through individual donations, corporate sponsorships, and fundraising events including the annual EHE Fun Run & Walk and EHE Awareness Month campaigns. The foundation also receives grants from private donors and partner organizations.
Go-to-market motion1 record
Distribution channels4 records
Marketing channels8 records
The EHE Foundation product offering
Product offeringCore offering
The EHE Foundation is a nonprofit patient advocacy organization that delivers free patient services (newly-diagnosed guidance, provider directory, support groups, educational resources), maintains research infrastructure including the EHE Global Patient Registry and EHE Biobank, funds EHE research grants, and convenes the global EHE community through the annual EHE 360 Global Conference, EHE 360 Connect webinars, and the EHE Fun Run & Walk fundraising event. All offerings are provided at no cost to patients and caregivers, funded through donations, sponsorships, and fundraising.
Product overview
The EHE Foundation offers a comprehensive suite of patient-focused services and research programs for Epithelioid Hemangioendothelioma (EHE), an ultra-rare vascular sarcoma. The core offerings include the EHE Global Patient Registry (hosted on NORD's IAMRARE platform) for patient-powered research data collection, the EHE Biobank for tissue and biospecimen donation, EHE Support Groups for peer support, EHE 360 Connect educational webinars, and the annual EHE 360 Global Conference. Additional resources include a Provider Directory, Clinical Trials Information, EHE Library of research publications, and the EHE Research Grants Program funding. Fundraising initiatives include the annual EHE Fun Run & Walk event.
Differentiator
Problem solved
Functional benefit
Products and services
- EHE Global Patient Registry An online global patient-powered natural history study that collects standardized information about EHE patients' experiences over time to advance research and support clinical trial recruitment. Hosted by NORD on the IAMRARE platform. Available for free to EHE patients worldwide.
- EHE Biobank An open, ongoing collection of tissue samples and biospecimens (blood, bodily fluids) donated by EHE patients. Samples are preserved and made available to qualified researchers to accelerate EHE research. Coordinated through the foundation's Biobank Coordinators.
- EHE Support Groups Free virtual meetings for adults affected by EHE, professionally led covering topics that help support patients newly affected by EHE as well as those who have lived with EHE longer. Available to EHE patients and caregivers globally.
- EHE 360 Connect Educational webinar program presenting information from clinicians and research communities on EHE topics. Recordings are archived and available for free viewing. Targets EHE patients, caregivers, researchers, and clinicians.
- EHE 360 Global Conference Annual virtual international forum bringing together patients, caregivers, researchers, clinicians, and industry partners for substantive scientific and clinical education on EHE. The 2026 conference drew 187 registrants from 19 countries spanning five continents.
- EHE Research Grants Program Research grants program funding innovative basic, translational, and clinical proposals to advance scientific knowledge in EHE. The foundation has committed over $2,000,000 to advance EHE research globally through this program. Targets academic researchers and clinicians.
- EHE Fun Run & Walk Annual virtual community-driven awareness and fundraising event supporting people affected by EHE. Participants register and can join from anywhere globally to raise funds and awareness for the EHE community.
- Provider Directory A searchable and sortable directory of clinicians with experience treating EHE, designed to help patients find sarcoma specialists familiar with the ultra-rare disease. Available free to EHE patients.
- Clinical Trials Information A continuously updated list of active clinical trials that include patients diagnosed with EHE, with details and contacts accessible via ClinicalTrials.gov. Provided free to EHE patients seeking treatment options.
- EHE Library A collection of nearly 200 publications and articles about EHE research and treatments available online, including both open access and subscription-required articles. Targets researchers, clinicians, and informed patients.
Quantifiable outcome
- Over $2 million committed to EHE research globally
- +2 more outcomes
Companies that use The EHE Foundation
Customer profileNamed customers1 record
Segments3 records
Ideal customer profiles3 records
The EHE Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature2 records
The EHE Foundation partnerships and signals
Strategic signalPartnerships
13 partnerships are on record, tiered core and minor.
- National Organization for Rare Disorders (NORD)coreNORD hosts the EHE Global Patient Registry on their IAMRARE platform, providing secure data collection infrastructure for natural history studies and clinical trial recruitment. NORD is a nonprofit leading the fight to improve lives of rare disease patients and families.
- xCurescorePartnership with xCures, a pioneer in healthcare data management, to gather medical information from EHE patients into structured, regulatory-grade clinical data. The platform collects and organizes medical data to study the natural history of EHE.
- CURE Drug Repurposing Collaboratory (CDRC)coreEHE Foundation partners with CDRC, an initiative of the Critical Path Institute, as a member of the Sarcoma Task Force and Rare Coordinating Committee. CDRC explores whether existing drugs can be repurposed for ultra-rare sarcomas like EHE.
- NCI MyPART NetworkcorePartnership with the MyPART network of NCI's Rare Tumors Initiative, focusing on accelerating translation of potential new therapies for rare tumors through a Natural History Study of Rare Solid Tumors.
- EHE Rare Cancer Charity (UK)coreUK-based EHE organization co-funding the European EHE Research Collaboration with the Istituto Nazionale dei Tumori in Milan, Institute of Cancer Research (UK), and Royal Marsden Hospital.
- EHE Rare Cancer Foundation AustraliacoreAustralian EHE organization co-funding research grants including the Lamar Lab at Albany Medical College and the Antonescu lab at Memorial Sloan Kettering.
- SARCcoreSARC (Sarcoma Alliance for Clinical Research) is conducting the SARC046 Phase 2 clinical trial of nab-sirolimus in EHE patients, funded by the US Department of Defense.
- Cleveland Clinic (Lerner Research Institute)coreResearch collaboration with Dr. Ajaybabu Pobbati's lab investigating FDA-approved drug repurposing for EHE treatment and CDK9 inhibitors for aggressive metastatic EHE.
- Albany Medical College (Lamar Lab)coreResearch collaboration with Dr. John Lamar's lab investigating statins as potential EHE treatment and development of blood-based biomarkers for disease monitoring.
- Koch Institute for Integrative Cancer Research at MIT (Boehm Lab)coreCollaboration with Dr. Jesse Boehm's lab, awarded a 3-year grant through the Department of Defense Rare Cancers Research Program, to create a platform for rare cancer drug target discovery using patient-donated tumor tissue.
- Fondazione IRCCS Istituto Nazionale dei Tumori (Milan, Italy)coreItalian research institution collaborating on European EHE Research Collaboration evaluating cytokines and hormones as biomarkers for EHE, funded jointly with EHE Rare Cancer Charity UK.
- EHE ItaliaminorItalian EHE patient organization contributing to the global EHE community and participating in EHE 360 Global Conference leadership.
- Rare Cancer EHE Deutschland e.V. (Germany)minorGerman EHE patient organization contributing to the global EHE community and represented at EHE 360 Global Conference.
Scale indicators5 records
Recent moves6 records
Expansion highlights5 records
The EHE Foundation competitors and assessment
Company assessmentDirect peers
- Cholangiocarcinoma Foundation: Patient advocacy nonprofit for cholangiocarcinoma, a rare bile duct cancer. Runs research grants, patient registry, annual conference, and collaborates with biotech sponsors — directly comparable operating model in the rare-cancer patient advocacy space.
- Desmoid Tumor Research Foundation: Patient advocacy nonprofit for desmoid tumors, another ultra-rare sarcoma subtype. Comparable in mission (research funding, patient support, expert convening) and scale (small staff, ultra-rare patient population, research-grant-funded model).
- EHE Rare Cancer Charity (UK): UK-based nonprofit dedicated to EHE with the same disease-specific mission. Co-funds the European EHE Research Collaboration with the Foundation and is a direct global counterpart serving the same patient population across geographies.
- National Leiomyosarcoma Foundation: Patient advocacy nonprofit focused on leiomyosarcoma, a rare soft-tissue sarcoma. Operates patient services, funds research, and hosts community events with a model closely paralleling the EHE Foundation's patient registry, support groups, and research grant programs.
- EHE Rare Cancer Foundation Australia: Australian nonprofit serving EHE patients, co-funding research grants including the Lamar Lab at Albany Medical College and Antonescu lab at Memorial Sloan Kettering alongside the Foundation. Sister organization addressing the same ultra-rare disease in a different geography.
- Rare Cancer EHE Deutschland e.V. German EHE patient organization represented at EHE 360 Global Conference and contributing to the global EHE community. Direct disease peer serving German patients with the same patient-advocacy mission.
- The Life Raft Group: Patient advocacy nonprofit for GIST (gastrointestinal stromal tumor), another rare sarcoma. Operates a patient registry, funds research, and runs support programs with a comparable model to the EHE Foundation's biobank/registry/conference structure.
- EHE Italia: Italian EHE patient organization contributing to the global EHE community and participating in EHE 360 Global Conference leadership. Sister organization with same disease focus serving Italian patients and caregivers.
Broad incumbents
- National Organization for Rare Disorders (NORD): US umbrella organization for rare diseases hosting the EHE Foundation's registry on its IAMRARE platform. Provides infrastructure and advocacy across thousands of rare conditions — broader portfolio but overlapping patient-advocacy and registry capabilities.
- Sarcoma Alliance for Clinical Research (SARC): Multi-institution consortium conducting sarcoma clinical trials including the SARC046 Phase 2 trial in EHE funded by the Department of Defense. Broader sarcoma scope but a key research partner with overlapping clinical-research mission.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks2 records
Key highlights7 records
Customer concentration
The EHE Foundation social profiles
Digital presenceThe EHE Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
The EHE Foundation leadership team
Management profileNumber of profiles
Profiles7 records
The EHE Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
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The EHE Foundation M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about The EHE Foundation
What does The EHE Foundation do?
The EHE Foundation is a nonprofit patient advocacy organization that delivers free patient services (newly-diagnosed guidance, provider directory, support groups, educational resources), maintains research infrastructure including the EHE Global Patient Registry and EHE Biobank, funds EHE research grants, and convenes the global EHE community through the annual EHE 360 Global Conference, EHE 360 Connect webinars, and the EHE Fun Run & Walk fundraising event. All offerings are provided at no cost to patients and caregivers, funded through donations, sponsorships, and fundraising.
Is The EHE Foundation a public or private company?
The EHE Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was The EHE Foundation founded?
The EHE Foundation was founded in 2015. It employs 1 to 10 people.
Where is The EHE Foundation based?
The EHE Foundation is headquartered in Green Bay, United States, in the North America region.
How does The EHE Foundation make money?
One revenue line is on record: donations and Fundraising.
Who are The EHE Foundation's main competitors?
Direct peers on record are Cholangiocarcinoma Foundation, Desmoid Tumor Research Foundation, EHE Rare Cancer Charity (UK), National Leiomyosarcoma Foundation, EHE Rare Cancer Foundation Australia, Rare Cancer EHE Deutschland e.V., The Life Raft Group and EHE Italia. Broad incumbents are National Organization for Rare Disorders (NORD) and Sarcoma Alliance for Clinical Research (SARC).
Does The EHE Foundation have an API?
No public API is recorded for The EHE Foundation.
What industry is The EHE Foundation in?
The EHE Foundation's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8000.