Hereditary Neuropathy Foundation

What Hereditary Neuropathy Foundation does

The Hereditary Neuropathy Foundation (HNF) is a 501(c)(3) nonprofit founded in 2001 by CEO Allison Moore, dedicated to accelerating therapeutic development for Charcot-Marie-Tooth (CMT) disease and related inherited neuropathies. The foundation operates a multi-asset research platform anchored by the GRIN (Global Registry for Inherited Neuropathies) — described as the world's largest IRB-approved patient registry for inherited neuropathies with more than 6,000 members across 72 countries — and the CMT Biobank, the first open-access CMT biospecimen repository. HNF also runs the TRIAD (Therapeutic Research In Accelerated Discovery) network, a 17-year collaboration among academia, government, and industry; a digital wearable monitoring study with BioSensics; CMT-CERTIFY clinical trial readiness training; and patient-facing programs including CMT Genie (genetic testing guidance), CMT Connect (webinars), Movement Is Medicine (adaptive exercise), and the annual CMT Summit.

The core technology stack spans a Matrix-based registry platform (re-launched 2022), the CMT&Me App via Vitaccess for real-time quality-of-life data, and wearable sensor infrastructure for pediatric mobility outcomes. HNF is also the only patient organization to have independently organized an FDA Patient-Focused Drug Development meeting (Sept 28, 2018), and maintains a partnership with the Critical Path Institute for regulatory strategy.

HNF serves four primary segments: CMT patients and families (free registry, biobank, educational, and community programs); academic researchers and biotech/pharma companies (TRIAD partners including Applied Therapeutics, NMD Pharma, Pharnext, ENCell, Augustine Therapeutics, Miralinc, and Rarebase); the FDA and regulatory agencies; and healthcare providers via a Centers of Excellence network. The business model is non-commercial: all patient-facing programs are free, and revenue comes from individual donations, grassroots fundraising (Team CMT, birthday campaigns), foundation and corporate grants (including MDA), and industry partnerships/sponsorships under the TRIAD framework. In June 2026 HNF launched the CMT Cure Accelerator, a $10 million campaign consolidating its infrastructure under a unified funding initiative.

Name

Hereditary Neuropathy Foundation

Legal name

Hereditary Neuropathy Foundation

Website

https://hnf-cure.org

Company type

Private

Founded year

2001

Operating status

Operating

Headcount range

1–10 employees

Short description

The Hereditary Neuropathy Foundation is a 501(c)(3) nonprofit that accelerates Charcot-Marie-Tooth therapeutic development through the GRIN patient registry, CMT Biobank, and TRIAD research network, serving CMT patients, families, researchers, and biotech/pharma partners across 72 countries.

Ownership category

akta.pro rank

Product category

Rare Disease Research and Patient Advocacy

NAICS

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

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Health Services (8000)

akta.pro primary industry

Neurogenetics & Rare Neurologic Diseases (HLAKAIAO)

Keywords

• Rare disease research
• Patient registry services
• Biobank operations
• Nonprofit patient advocacy
• Clinical trial readiness

Headquarters

HQ city

New York

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, Infrastructure, Others

Revenue model

1. Donations and Charitable Contributions: HNF is a 501(c)(3) public charity that relies on donations from individuals, families, and supporters. Fundraising programs include Team CMT athletic events, birthday fundraisers, Facebook fundraisers, and general donations.
2. Foundation and Corporate Grants: HNF receives grants from organizations including the Muscular Dystrophy Association (MDA) for research initiatives such as the digital wearable study. May also receive funding from pharmaceutical and biotech TRIAD partners.
3. Industry Partnerships and Sponsorships: TRIAD partnerships with biotech and pharmaceutical companies may include research funding, sponsorship of events like the CMT Summit, and collaborative research arrangements.

Pricing tiers

Go-to-market motion1 record

Distribution channels5 records

Marketing channels10 records

Core offering

Hereditary Neuropathy Foundation is a 501(c)(3) nonprofit foundation that operates research infrastructure and patient programs for Charcot-Marie-Tooth (CMT) disease and related inherited neuropathies. Core offerings include the GRIN (Global Registry for Inherited Neuropathies) patient registry, the open-access CMT Biobank, the TRIAD research collaboration network, and patient/community programs such as CMT Genie, Movement Is Medicine, and CMT Connect webinars. All programs are provided free to patients and funded through donations, grants, and corporate partnerships.

Product overview

Hereditary Neuropathy Foundation operates a platform-based model centered on research infrastructure for Charcot-Marie-Tooth disease. The core portfolio includes GRIN (Global Registry for Inherited Neuropathies) as the world's largest IRB-approved patient registry, the CMT Biobank as the first open-access biospecimen repository, and TRIAD as a collaborative research network connecting academia, government, and industry. These are complemented by patient-facing programs including CMT Genie (genetic testing guidance), Movement Is Medicine (adaptive exercise), CMT Connect (webinars), and the annual CMT Summit + Retreat. HNF also provides FDA engagement through its Patient-Focused Drug Development Meeting and collects real-world patient data via the CMT&Me App partnership with Vitaccess.

Differentiator

Problem solved

Functional benefit

Brands

• GRIN: Global Registry for Inherited Neuropathies - HNF's patient registry for CMT and inherited neuropathies
• CMT Genie
• TRIAD
• Movement Is Medicine
• CMT Cure Accelerator
• Team CMT

Products and services

• GRIN (Global Registry for Inherited Neuropathies) World's largest IRB-approved patient registry for Charcot-Marie-Tooth disease and inherited neuropathies with over 6,000 members across 72 countries, enabling patients to contribute health data, genetic information, and symptoms to support research and clinical trial development.
• CMT Biobank First open-access CMT biobank providing biospecimens available to any qualified researcher worldwide for accelerating CMT research and therapeutic development.
• TRIAD (Therapeutic Research In Accelerated Discovery) Collaborative research network connecting academia, government, and industry to accelerate CMT drug development, with a TRIAD Council of CMT thought leaders providing guidance on research strategy and grant proposals.
• CMT Genie Genetic testing guidance tool providing an easy guide for genetic testing related to CMT diagnosis.
• Movement Is Medicine Adaptive free online exercise classes designed for people living with CMT and related conditions.
• CMT Connect Webinar series designed to empower, educate, and connect the CMT community through educational presentations on symptoms, research, and daily living with CMT.
• CMT Centers of Excellence National network of medical centers designated for the hereditary neuropathy patient community, providing specialized care and research coordination.
• CMT&Me App International study application developed with Vitaccess to collect real-time patient data on how CMT impacts quality of life, used in clinical trial design and research.
• CMT Summit + Health and Wellness Retreat Annual convening bringing together patients, families, clinicians, researchers, biotech/pharma leaders, and regulators to accelerate therapeutic progress for CMT, featuring FDA regulatory sessions and active research participation.
• Patient-Focused Drug Development Meeting Externally-led PFDD meeting providing patients and families opportunity to inform FDA and drug developers on burdens of living with CMT and treatment perspectives.
• CMT Cure Accelerator $10 million research funding campaign consolidating HNF's existing research infrastructure (GRIN Registry, CMT Biobank, TRIAD Network, Transgenic Rat Models) under one unified funding initiative.

Quantifiable outcome

• 96% of 2026 CMT Summit attendees rated overall experience as Excellent or Very Good; 93% would attend again
• +2 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

20 partnerships are on record, tiered core and supporting.

• Applied TherapeuticscoreStrategic or Co-development PartnerClinical-stage biopharmaceutical company conducting the INSPIRE Phase 3 trial for Govorestat (AT-007) for CMT-SORD patients. HNF provides patient registry data, supports trial recruitment through GRIN, and facilitates FDA engagement for the CMT-SORD community.
• NMD PharmacoreStrategic or Co-development PartnerClinical-stage biotech company developing NMD670 for CMT1 and CMT2 subtypes. HNF supports clinical trial design and patient recruitment; NMD Pharma presented Phase 2 SYNAPSE-CMT trial updates at HNF CMT Summit.
• BioSensicscoreTechnology or IntegrationCo-sponsor of HNF's wearable-based monitoring study actively enrolling pediatric participants ages 8-18 to measure daily activity and mobility outcomes for CMT clinical trials.
• RarebasecoreStrategic or Co-development PartnerUses cutting-edge technology and repurposed FDA-approved drugs to deliver accelerated treatments for various types of CMT through TRIAD partnership.
• Pharnext PharmaceuticalscoreStrategic or Co-development PartnerClinical-stage biopharmaceutical company partnered with HNF in 2012 to support development of PXT3003 for CMT1A.
• Miralinc PharmacoreStrategic or Co-development PartnerPioneering next-generation HDAC6i compounds to advance disease-modifying treatments for CMT patients and other peripheral neuropathies.
• University of CambridgecoreStrategic or Co-development PartnerConducts retrospective natural history study for CMT6 (C12orf65/MTRFR gene) as part of TRIAD sponsored research.
• University of MiamicoreStrategic or Co-development PartnerSaporta CMT Stem Cell Laboratory developing iPSCs for CMT4A (GDAP1) and CMT6 (C12orf65/MTRFR) through TRIAD partnership.
• Burke Institute (Willis Lab)coreStrategic or Co-development PartnerDeveloped CMT4A rat model owned by HNF to test gene therapy for GDAP1, a recessive CMT4 subtype.
• Muscular Dystrophy Association (MDA)coreStrategic or Co-development PartnerAwarded HNF an Advocacy Collaboration Grant for digital wearable study on CMT. MDA conference serves as platform for HNF to connect with neuromuscular disease community and present research.
• Genome MedicalsupportingTechnology or IntegrationNationwide medical practice specializing in virtual genetic counseling services for CMT patients.
• Matrix by Across HealthcaresupportingTechnology or IntegrationPlatform hosting HNF's Global Registry for Inherited Neuropathies (GRIN) re-launched in 2022.
• VitaccesssupportingTechnology or IntegrationDeveloped CMT&Me App for international real-time patient data collection to determine how CMT impacts quality of life.
• Critical Path InstitutecoreStrategic or Co-development PartnerCo-founded by Dr. Janet Woodcock, former Acting FDA Commissioner. Partnership brings regulatory expertise to HNF's rare disease programs.
• University of Helsinki (Battersby Lab)supportingStrategic or Co-development PartnerReceives HNF support to develop effective treatment approach for C12orf65 deficiency (MTRFR).
• ENCellsupportingStrategic or Co-development PartnerSouth Korean biotech company conducting Phase 2a clinical trial of EN001 stem cell therapy for CMT1A.
• Augustine TherapeuticssupportingStrategic or Co-development PartnerBegan Phase I clinical trial of AGT-100216 for CMT; HNF supports through TRIAD network.
• Alesta TherapeuticssupportingStrategic or Co-development PartnerAdvancing ALE2 to target rare forms of CMT through TRIAD partnership.
• EnvigosupportingTechnology or IntegrationLaboratory animal source that developed rat models for CMT4A-GDAP1 and SORD deficiency.
• Wuxi BiologicssupportingTechnology or IntegrationSupporting PK dog studies to advance HDAC6i program for CMT2A.

Scale indicators10 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella rare disease advocacy organization representing 300+ patient foundations including HNF's disease space. Provides shared infrastructure (registries, research grants, policy advocacy) that competes with and complements individual foundations like HNF.
• ALS Association: Large neurological disease nonprofit with established patient registry, certified center network, and deep pharma trial partnerships — a scaled-up version of HNF's model applied to ALS. Useful comparable for evaluating what infrastructure investment yields at scale.
• Muscular Dystrophy Association (MDA): Large established neuromuscular disease umbrella organization that funds CMT research, runs its own registry and clinical network, and awarded HNF its Advocacy Collaboration Grant. Overlapping patient population but vastly broader scope across 40+ neuromuscular conditions.
• EveryLife Foundation for Rare Diseases: Policy and advocacy organization accelerating rare disease therapeutic development. Comparable in regulatory engagement (FDA PFDD support, patient experience data) and industry collaboration, but focused on policy rather than direct research infrastructure.

Direct peers

• Friedreich's Ataxia Research Alliance (FARA): Rare inherited neurological disease foundation combining patient registry, biobank, biotech partnerships, and FDA PFDD-style engagement. Operates with a similarly lean team and similar revenue mix (donations, grants, industry partnerships).
• Parent Project Muscular Dystrophy (PPMD): Patient-founded nonprofit driving Duchenne muscular dystrophy research using a comparable model — patient registry, biotech partnerships, FDA engagement, and a Cure Roadmap. Highly comparable operating playbook despite different disease focus.
• Cure SMA: Spinal muscular atrophy patient foundation that scaled from small nonprofit to driving three FDA-approved SMA therapies. Direct comparable for HNF's aspiration of becoming the indispensable research infrastructure for CMT therapeutic development.
• CMT Research Foundation: Smaller CMT-focused research foundation funding translational and preclinical projects. Directly competes for biotech partnership visibility and CMT donor dollars despite a narrower, research-grant-only operating model.
• Charcot-Marie-Tooth Association (CMTA): The other major US patient foundation exclusively focused on Charcot-Marie-Tooth disease. Directly comparable mission (CMT research, patient support) and competes for the same donor, patient, and biotech partner mindshare as HNF.
• Foundation for Peripheral Neuropathy: Patient organization focused on peripheral neuropathy more broadly (including inherited forms). Overlaps HNF's research, education, and patient support mission but with a wider disease scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat6 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xtwitter.com/CMTNeuropathy
• YouTubeyoutube.com/user/HNFoundation
• Facebookfacebook.com/HereditaryNeuropathyFoundation
• LinkedInlinkedin.com/company/hnf-hereditary-neuropathy-foundation
• Instagraminstagram.com/cmtwegotthis
• TikToktiktok.com/@curecmt

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Hereditary Neuropathy Foundation