What Huntington’s Disease Society of America does

Huntington's Disease Society of America (HDSA) is a 501(c)(3) nonprofit organization founded in 1967 and headquartered in New York. It is the oldest and largest US nonprofit singularly dedicated to improving the lives of people affected by Huntington's disease (HD) and their families. The organization operates a national network of 69 Centers of Excellence across 37 states plus Washington, D.C., which deliver HD-specialized clinical care, social work, and research enrollment; it also funds a fellowship program and a research grant program that have together committed more than $20 million to HD research since 1999. Programs are delivered through a combination of in-person support services (social workers, support groups, regional chapters) and digital tools including the HDNavigator mobile app, the HD TrialFinder clinical trial matching service, and a telehealth offering.\n\nHDSA's business model is that of a traditional US disease-focused charitable organization. Revenue is generated primarily through individual donations, signature fundraising events such as the annual convention, regional walks, and galas, corporate partnerships, and grants from peer organizations including the CHDI Foundation. The organization also builds and maintains strategic partnerships with the CHDI Foundation, Rare-X, PatientsLikeMe, HDBuzz, and HD-COPE to extend its research, data, and advocacy reach. HDSA has received multiple consecutive Charity Navigator 4-star ratings and employs 11-50 staff. In 2025, the organization added a new Center of Excellence site, held its 40th Annual Convention, refreshed its C-suite with a new CEO (Amy Gray, February 2025), a new Board Chair (Jenne Coler-Dark, December 2024), a new Chief Development & Field Officer (Robert Shaw, November 2025), and a new Chief Financial Officer (David Ticker, February 2026).

Name

Huntington’s Disease Society of America

Legal name

Huntington's Disease Society of America

Website

https://hdsa.org

Company type

Private

Founded year

1967

Operating status

Operating

Headcount range

11–50 employees

Short description

HDSA is the oldest and largest US nonprofit focused on Huntington's disease, operating 69 Centers of Excellence across 37 states plus D.C. and funding research, clinical care, and family support services for the HD community.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Support Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300), Services-Health Services (8000), Services-Membership Organizations (8600)

akta.pro primary industry

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

Keywords

• Huntington's disease support
• Patient advocacy services
• Medical research funding
• Rare disease nonprofit
• Community health support

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: HDSA generates revenue primarily through individual donations, including one-time donations, monthly giving, tribute and memorial donations, and workplace giving programs. The organization also accepts stock/assets/real estate donations, vehicle donations, and operates sweepstakes.
2. Planned Giving and Legacy Donations: Legacy giving programs including planned giving options for long-term donor relationships
3. Corporate Partnerships: Corporate sponsorships and partnerships for events and initiatives
4. Event Revenue: Revenue from events including Team Hope Walks, Annual Convention, golf outings, and other fundraising events. The NYC Marathon team has raised over $126,000, and Freeze HD events have raised over $200,000.
5. Publications Sales: Sale of HDSA publications, films, and educational materials through the shop

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels8 records

Core offering

Huntington's Disease Society of America is a 501(c)(3) nonprofit organization that delivers a national ecosystem of patient support services, clinical care coordination, and research funding for the Huntington's disease (HD) community. Its core offerings include the HDSA Centers of Excellence network (69 specialized care clinics in 37 states), HD TrialFinder for clinical trial matching, HDSA Telehealth for free remote counseling, regional social workers, free support groups, the HDNavigator mobile app, an extensive resource library, and annual events such as the Convention and Team Hope Walks.

Product overview

The Huntington's Disease Society of America (HDSA) operates as a nonprofit organization offering a unified portfolio of patient support, education, and research services rather than a commercial technology product. The core offerings include: the HDSA Centers of Excellence network (69 comprehensive care clinics), HD TrialFinder (clinical trial matching), HDSA Telehealth (free remote counseling), and the HDNavigator mobile app. These are complemented by community support services including social workers, support groups, and the Resource Library. HDSA supports Huntington's disease research through fellowship programs (HD Human Biology Project, Donald A. King Summer Research Fellowship, Berman-Topper Career Development Fellowship). The organization also provides educational content through the HDSA Podcast, HDSA Films documentary series, and Healthcare Professional Continuing Education courses. Annual events include the HDSA Convention and Team Hope Walk Program. HDSA does not offer a commercial software product; all services are provided as nonprofit programs funded by donations and grants.

Differentiator

Problem solved

Functional benefit

Products and services

• HDSA Centers of Excellence A network of 69 comprehensive care clinics across 37 states and Washington DC providing expert Huntington's disease medical care, supported by HDSA grants. For HD patients and families seeking specialized multidisciplinary clinical care.
• HD TrialFinder A first-of-its-kind clinical trial matching service that helps Huntington's disease patients find and enroll in relevant clinical trials. For HD patients and families interested in research participation.
• HDSA Telehealth Free telehealth counseling service for Huntington's disease families providing remote mental health and support services. For HD patients and families seeking accessible remote counseling.
• HDNavigator Mobile App Mobile application providing Huntington's disease information, resources, and community connectivity for patients and families on the go. For HD patients, families, and caregivers seeking mobile access to HD information.
• HDSA Social Workers Regional social workers providing information, education, and access to community-based services for individuals and families affected by Huntington's disease. For HD patients and families needing personalized local support.
• HDSA Support Groups Free support groups for individuals with Huntington's disease, their loved ones, and families impacted by HD. For HD patients and families seeking peer support and community connection.
• HDSA Resource Library Comprehensive library of educational materials, publications, and resources for Huntington's disease education and advocacy. For patients, families, caregivers, and advocates seeking HD education.
• HD Human Biology Project Fellowship program funding human biology research focused on Huntington's disease, with awards of $449,971 in 2025 and $523,320 in 2024. For HD researchers seeking research funding.
• Donald A. King Summer Research Fellowship Competitive fellowship funding undergraduate life science students, pre-medical students, and first-year medical students to complete summer research projects under established HD researchers at accredited U.S. institutions. For students pursuing HD research training.
• Berman-Topper Family HD Career Development Fellowship Prestigious career development fellowship supporting researchers dedicated to Huntington's disease science and treatment development. For HD researchers pursuing careers in HD science.
• HDSA Annual Convention Annual gathering of patients, families, caregivers, researchers, and advocates for education, networking, and hope-building. For the HD community seeking connection, education, and advocacy.
• Team Hope Walk Program Nationwide community fundraising walks supporting Huntington's disease awareness and research funding. For HD community members and supporters.
• Healthcare Professional Continuing Education Online accredited continuing education courses for physicians, social workers, physical therapists, occupational therapists, and genetic counselors on Huntington's disease issues. For licensed healthcare professionals serving HD patients.

Quantifiable outcome

• $20+ million committed to research since 1999
• +2 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

Feature4 records

Partnerships

Eight partnerships are on record, tiered core and minor.

• Rare-XcoreStrategic or Co-development PartnerHDSA partnered with Rare-X to launch an HD Data Collection Initiative to accelerate treatments for Huntington's disease. The partnership aims to create an integrated data platform to advance research and drug development for HD.
• PatientsLikeMecoreStrategic or Co-development PartnerHDSA partnered with PatientsLikeMe to create an integrated online community for both patients and caregivers, providing a platform for shared experiences and data sharing within the HD community.
• CHDI FoundationcoreStrategic or Co-development PartnerHDSA partners with CHDI Foundation on various initiatives including the annual HD Therapeutics Conference, HD Legacy brain donation program, and collaborative research efforts. CHDI and HDSA co-host the annual HD Therapeutics Conference.
• HealthWell FoundationminorStrategic or Co-development PartnerHDSA collaborated with HealthWell Foundation to launch a Movement Disorders Fund to provide financial assistance to Medicare patients with Huntington's disease for chorea medications.
• ALS Association and Teva PharmaceuticalsminorStrategic or Co-development PartnerHDSA partnered with the ALS Association and Teva Pharmaceuticals to identify novel therapeutic targets for CNS disorders through a crowdsourcing challenge.
• Huntington's Disease Coalition for Patient Engagement (HD-COPE)coreStrategic or Co-development PartnerHDSA is a founding member of HD-COPE, a global coalition of Huntington's disease patient advocacy organizations united to form an international patient engagement network.
• HD Support & Care NetworkminorChannel Partner/ Reseller/ DistributorHDSA partnered with HD Support & Care Network to strengthen HD support groups in California and Arizona, expanding community reach in those regions.
• WeHaveAFace.orgminorStrategic or Co-development PartnerHDSA partnered with WeHaveAFace.org to increase access to The Huntington's Disease Project: Removing the Mask documentary, expanding educational resources for the HD community.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Parkinson's Foundation: Parkinson's Foundation is a U.S. nonprofit serving patients with another neurodegenerative movement disorder. It runs a Centers of Excellence network, funds research fellowships, and provides patient/caregiver support — directly comparable to HDSA's structure and service mix for a parallel disease community.
• Muscular Dystrophy Association: MDA is a disease-specific nonprofit operating a Care Center network (closely paralleling HDSA's Centers of Excellence), funding research fellowships, providing support groups, and running large-scale community fundraising events. Its multi-disease model is broader than HDSA's, but its operating playbook is highly comparable.
• CHDI Foundation: CHDI Foundation is HDSA's core strategic partner and the largest private funder of HD research globally. It directly co-hosts the annual HD Therapeutics Conference with HDSA and supports the HD Legacy brain donation program — making it the most mission-aligned peer focused exclusively on Huntington's disease drug discovery.
• Hereditary Disease Foundation: The Hereditary Disease Foundation is a long-standing nonprofit exclusively focused on Huntington's disease research funding and scientific collaboration. While smaller and more research-focused than HDSA, it serves the same disease community and is a direct, mission-aligned peer.
• ALS Association: The ALS Association is the closest structural peer to HDSA: a U.S. disease-specific nonprofit supporting patients and families with a fatal neurodegenerative disorder, operating a network of Certified Treatment Centers, funding research fellowships, hosting an annual convention, and providing support groups and care services. The mission, organizational shape, and revenue model are highly analogous.
• Cystic Fibrosis Foundation: CFF operates an accredited Care Center network, funds a research pipeline that has yielded approved therapies, and runs a national volunteer-driven fundraising model. It is the gold-standard peer for how a disease-specific nonprofit can scale specialty care, research funding, and community engagement — a strategic benchmark for HDSA.
• National Multiple Sclerosis Society: The National MS Society is a U.S. nonprofit serving patients with another chronic neurological disease, operating comprehensive care centers, funding research fellowships, providing support services, and running large-scale community walks and fundraising events — a structural peer to HDSA across service lines.

Broad incumbents

• Leukemia & Lymphoma Society: LLS is a large, established disease-specific nonprofit funding research, providing patient services and support groups, and running signature community fundraising campaigns. Its operating model — research + patient services + community fundraising — closely mirrors HDSA's mix at a meaningfully larger scale.
• Alzheimer's Association: The Alzheimer's Association is a much larger, broader neurodegenerative-disease nonprofit operating a comparable service mix (specialty care referrals, research funding, support groups, advocacy, annual events). It is a broader-incumbent peer — significantly larger in budget and scope than HDSA, but the closest analog for a scaled neurodegenerative patient-advocacy organization.

Emerging players

• Parent Project Muscular Dystrophy: PPMD is a smaller, disease-specific nonprofit for Duchenne muscular dystrophy that operates Certified Care Centers, funds research, and runs advocacy and fundraising programs. As a smaller disease-specific nonprofit, it parallels HDSA's structural model in a more resource-constrained context.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/HDSA
• YouTubeyoutube.com/channel/UCbjowsMQBkoj8TJbjsxPdaw/videos?view=0&sort=dd&flow=grid
• Facebookfacebook.com/HDSofA
• LinkedInlinkedin.com/company/huntington's-disease-society-of-america
• Instagraminstagram.com/hdsanational

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Huntington’s Disease Society of America