What CHDI Foundation does

CHDI Foundation is a privately-funded nonprofit biomedical research organization exclusively devoted to accelerating therapeutic development for Huntington's disease (HD). Founded circa 2002-2003 and headquartered in New York with additional offices in Los Angeles and Princeton, the foundation operates as a science management organization with approximately 200+ staff members working across these locations. CHDI employs a virtual operating model that funds and coordinates therapeutic development projects through collaborations with contract research organizations and a global network of more than 700 academic and industrial researchers. The foundation's mission is to de-risk therapeutic approaches in HD and advance them to a stage where pharmaceutical partners will invest in full clinical development.

CHDI's core platform assets are Enroll-HD, a worldwide HD clinical research platform and observational study launched in 2012 that has enrolled more than 28,000 participants across 155 clinical sites in 23 countries on four continents, and HDinHD, an open-science preclinical informatics portal. Additional resources include clinical biorepositories, HD mouse models, assays, antibodies, and other research tools that CHDI provides to the HD research community free of charge under a precompetitive sharing policy. The foundation typically does not assert intellectual property claims on reagents developed using its funding, and it organizes the annual HD Therapeutics Conference plus, in alternating years with the Huntington Study Group and European Huntington's Disease Network, the Huntington's Disease Clinical Research Conference.

CHDI's revenue model is private donor funding; the foundation has no commercial product revenue and provides its data, biosamples, and reagents without charge. Its customers are academic and industrial HD researchers, biotech and pharmaceutical partners (recently including Prilenia Therapeutics and Unlearn), 155 participating clinical research sites, and the broader HD patient and family community that participates in Enroll-HD. The foundation's scientific leadership spans dedicated VPs of Preclinical Biology, Chemistry, Fluid Biomarkers, Clinical Neuroimaging Research, Clinical Outcomes, and Program Management, supported by a C-suite including President Robi Blumenstein, CSO Robert Pacifici, COO Eileen Neacy, CMO Cristina Sampaio, and CLO David Rankin.

Name

CHDI Foundation

Legal name

CHDI Foundation, Inc.

Website

https://chdifoundation.org

Company type

Private

Founded year

2002

Operating status

Operating

Headcount range

51–100 employees

Short description

CHDI Foundation is a privately-funded nonprofit biomedical research organization exclusively dedicated to accelerating therapeutic development for Huntington's disease, operating the Enroll-HD clinical platform (28,000+ participants, 23 countries) and providing open-access data, biosamples, and research tools to a global network of 700+ HD researchers.

Ownership category

akta.pro rank

Product category

Biomedical Research Foundation / Nonprofit Science Management

NAICS

Voluntary Health Organizations (813212), Scientific Research and Development Services (5417)

SIC

Services-Commercial Physical & Biological Research (8731), Services-Health Services (8000)

akta.pro primary industry

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

akta.pro secondary industries

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM), Health Research Funding Agencies (Public/Quasi-Public) (HLAJALAB)

Keywords

• Huntington's disease research
• Clinical research platforms
• Biomedical research foundation
• Therapeutic development services
• Preclinical research resources

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices3 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

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

Revenue model

1. Private Donor Funding: CHDI Foundation is a privately-funded nonprofit biomedical research organization. As a nonprofit with no competitors in its disease focus, CHDI has no traditional revenue model - the organization is entirely funded through private donations and focuses its resources exclusively on Huntington's disease therapeutic development.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels5 records

Core offering

CHDI Foundation is a privately-funded nonprofit biomedical research organization that exclusively accelerates therapeutic development for Huntington's disease. It operates the Enroll-HD worldwide clinical research platform (28,000+ participants across 155 sites in 23 countries), the HDinHD preclinical informatics portal, and provides mouse models, reagents, antibodies, clinical biosamples, and clinical infrastructure to the global HD research community free of charge. It also coordinates a network of more than 700 academic and industrial researchers and hosts the annual HD Therapeutics Conference to convene the field.

Product overview

CHDI Foundation operates a science management organization focused exclusively on developing therapeutics for Huntington's disease. The organization provides a portfolio of interconnected resources including: Enroll-HD, a global clinical research platform with over 28,000 participants across 155 sites in 23 countries; HDinHD, a preclinical informatics platform for open science; and various research resources including clinical biorepositories, animal models, and research tools. CHDI also organizes the annual HD Therapeutics Conference and collaborates with academic HD researchers worldwide, acting as a collaborative enabler to lower barriers to entry for HD research.

Differentiator

Problem solved

Functional benefit

Products and services

• Enroll-HD A worldwide Huntington's disease clinical research platform and observational study launched in 2012 that has enrolled more than 28,000 participants at 155 clinical sites in 23 countries across Europe, North America, Latin America, and Australasia. Enroll-HD supports clinical trial design, enables faster and smarter recruitment, makes all clinical data and biosamples collected available to the wider HD research community, and helps improve clinical care for HD.
• HDinHD (Preclinical Informatics) An open science platform for Huntington's disease preclinical research that provides access to informatics tools, data sharing capabilities, and research resources for the HD scientific community.
• HD Therapeutics Conference An annual conference series focused on drug discovery and development for Huntington's disease, drawing participants and speakers from the biotech and pharmaceutical sectors as well as academia and research institutions. Serves as a forum for sharing ideas, learning about new disciplines, networking, and building collaborative partnerships.
• Clinical Biorepository A repository of clinical biosamples available to the Huntington's disease research community for biomarker discovery and validation studies.
• Mouse Models for HD Research Animal models for Huntington's disease research, including field guides and resources for researchers working with HD mouse models.
• Research Tools & Reagents Various research tools, reagents, and protocols made available to the HD research community to lower barriers to entry for working on Huntington's disease.
• Clinical Infrastructure & Capacity Building Building clinical infrastructure and capacity so that as soon as promising therapeutics are ready, the wider HD research community can quickly progress to clinical trials.

Quantifiable outcome

• Enroll-HD platform supports faster and smarter clinical trial recruitment for HD therapeutic programs
• +2 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

Feature4 records

Partnerships

Seven partnerships are on record, tiered core and minor.

• Prilenia TherapeuticscoreStrategic or Co-development Partner · 26 May 2026Prilenia Therapeutics announced a Data Use Agreement with CHDI Foundation to provide clinical data from the placebo arms of its PRIDE and PROOF studies for Huntington's disease research. CHDI receives a worldwide, non-exclusive license to use individual patient-level data and can share it with qualified third-party research institutions. The collaboration aims to improve clinical trial design and support the development of more effective treatments for Huntington's disease.
• UnlearncoreStrategic or Co-development Partner · 24 February 2026Unlearn, an AI company specializing in clinical development, is refining its Huntington's disease-specific Digital Twin Generator by training it with longitudinal patient data from CHDI Foundation's Enroll-HD clinical research platform. The platform contains data from over 22,000 active participants across 157 sites in 23 countries. The AI-generated digital twins are used in clinical trials to reduce variability and support treatment effect estimation, with the collaboration intended to accelerate progress for the Huntington's disease community.
• Huntington Study GroupcoreStrategic or Co-development PartnerCHDI works with the Huntington Study Group (HSG) to co-organize the Huntington's Disease Clinical Research Conference, held alternately in the US and Europe. HSG is a major clinical research organization dedicated to Huntington's disease.
• European Huntington's Disease Network (EHDN)coreStrategic or Co-development PartnerCHDI collaborates with EHDN to co-organize the Huntington's Disease Clinical Research Conference, held alternately in the US and Europe. EHDN is a European network dedicated to Huntington's disease research and clinical care.
• HD Advocacy Organizations WorldwidecoreStrategic or Co-development PartnerCHDI works closely with HD advocacy organizations worldwide including HDSA (Huntington's Disease Society of America), Huntington Society of Canada, and others to forge links between HD families and researchers/clinicians to speed the drug development process.
• HDYO (Huntington's Disease Youth Organization)minorStrategic or Co-development PartnerCHDI supports and participates in HDYO Congress events, which bring together young people affected by Huntington's disease for education and networking.
• Academic Research Institutions (Global Network of 700+ Researchers)coreStrategic or Co-development PartnerCHDI funds and collaborates with academic HD researchers around the world, with science directors and project managers working closely with a network of more than 700 researchers in academic and industrial laboratories globally. CHDI staff scientists manage internal therapeutic programs through collaborations at contract research organizations.

Scale indicators7 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Cystic Fibrosis Foundation: A major nonprofit foundation that funds cystic fibrosis research and operates a similar venture philanthropy model — investing in therapeutic development and clinical infrastructure to accelerate drug discovery. Comparable to CHDI as a disease-focused biomedical research foundation with patient data infrastructure and major pharma partnerships.
• Alzheimer's Association: The largest nonprofit funder of Alzheimer's research, operating clinical data initiatives and pharmaceutical partnerships to accelerate therapeutic development. Comparable to CHDI as a CNS-focused research foundation with data infrastructure and significant pharma engagement.
• Leukemia & Lymphoma Society: One of the largest disease-focused nonprofits, funding blood cancer research through grants, clinical trials, and biotech partnerships. Comparable to CHDI in scale, donor funding model, and role in advancing therapeutic development across a specific disease portfolio.
• National Multiple Sclerosis Society: A major nonprofit funding MS research through grants, clinical infrastructure, and pharma partnerships. Comparable to CHDI as a CNS-focused research foundation with established clinical platforms and a multi-decade operating history.

Direct peers

• Muscular Dystrophy Association: A nonprofit that funds neuromuscular disease research, operates clinical care infrastructure, and partners with biotech/pharma companies. Comparable to CHDI in mission model, scale, and use of donor funding to advance therapeutic development for a specific disease area.
• ALS Association: A leading ALS-focused nonprofit that funds research, operates clinical infrastructure, and partners with biotech/pharma to accelerate therapeutic development. Comparable to CHDI as a disease-focused research foundation with clinical data platforms and a portfolio approach to therapeutic funding.
• Hereditary Disease Foundation: The original foundation that funded the discovery of the Huntington's disease gene and provided the lineage from which CHDI Foundation emerged. Directly comparable as a nonprofit focused exclusively on hereditary disease research with a long-standing role in HD therapeutic advancement.
• Friedreich's Ataxia Research Alliance (FARA): A rare disease nonprofit focused on Friedreich's ataxia that operates a similar collaborative model — funding research, supporting clinical infrastructure, and partnering with biotech to advance therapeutics. Comparable to CHDI as a smaller-scale, rare-disease research foundation.
• Michael J. Fox Foundation for Parkinson's Research: A nonprofit that drives Parkinson's disease therapeutic development through research funding, clinical data platforms (similar to Enroll-HD), and partnerships with pharma/biotech. Highly comparable to CHDI in operating model, neuroscience focus, and use of precompetitive data sharing to accelerate CNS drug discovery.
• Huntington Study Group: A clinical research organization exclusively focused on Huntington's disease that conducts clinical trials and observational studies. Directly comparable as a core HD clinical research partner — CHDI co-organizes conferences with HSG and collaborates on HD clinical infrastructure.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat7 records

Key risks5 records

Key highlights7 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Profiles21 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about CHDI Foundation