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Hereditary Neuropathy Foundation Inc

EIN 13-4137654 · New York, NY

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthFair50 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

HNF, INC., A NON-PROFIT DEDICATED TO SUPPORTING PROJECTS THROUGH THE THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD)PROGRAM, A COLLABORATIVE EFFORT WITH ACADEMIA, GOVERNMENT AND INDUSTRY, TO DEVELOP TREATMENTS FOR CMT. CURRENTLY TRIAD INVOLVES MANY GROUPS THAT SPAN THE DRUG DISCOVERY, DRUG DEVELOPMENT, AND DIAGNOSTICS CONTINUUM. EDUCATION AND SUPPORT OF THE CMT COMMUNITY TO IMPROVE QUALITY OF LIFE IS ALSO A KEY COMPONENT OF HNF'S MISSION.

Income
$545,418
Spending
$894,903
Spent on programs
90%
Reserves
1.2 months of spending
Largest source of income
donations and private grants, 100%
Employees
2
Volunteers
9
Highest pay
$75,000, executive director

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Fair: 50 out of 100. Higher than 9% of charities in its peer group (medical research, $250k to $1m).

  • Reserves

    10 of 35

    Spendable reserves would cover 1.2 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 64% of income.

  • Income trend

    5 of 15

    Income fell 17% on the year before.

  • Spending floor

    15 of 15

    90% of spending went to programs and raising each dollar of donations cost 6 cents.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 94% of charities in its peer group (medical research, $250k to $1m).

  • Independent board

    25 of 25

    12 of 12 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (1)
  1. $805,802 spent. RESEARCH PROGRAMS ARE AS FOLLOWS: THERAPEUTIC RESEARCH IN ACCELERATED DISCOVERY (TRIAD) CONTINUES TO SERVE AS HNF'S PRIMARY TRANSLATIONAL RESEARCH ACCELERATOR, SUPPORTING THE DEVELOPMENT OF ESSENTIAL RESEARCH TOOLS (INCLUDING IPSCS AND ANIMAL MODELS), THERAPEUTIC CANDIDATES, DRUG SCREENING INITIATIVES, GENE THERAPY PROGRAMS, AND DIGITAL HEALTH TECHNOLOGY INNOVATIONS. THE PROGRAM MAINTAINS STRONG PARTNERSHIPS WITH ACADEMIC INSTITUTIONS, REGULATORY AGENCIES, AND INDUSTRY COLLABORATORS AND ADVANCES KEY SCIENTIFIC INITIATIVES IN BIOMARKER DEVELOPMENT, CLINICAL ENDPOINT REFINEMENT, AND THERAPY TRANSLATION. TRIAD ALSO LEADS THE ANNUAL CMT CLINICAL TRIAL READINESS SUMMIT, WHICH BRINGS TOGETHER GLOBAL EXPERTS TO ALIGN ON REGULATORY EXPECTATIONS, OPTIMIZE TRIAL DESIGN, AND ACCELERATE THERAPY DEVELOPMENT. THE GLOBAL REGISTRY FOR INHERITED NEUROPATHIES (GRIN) CONTINUES TO GROW AS AN INTERNATIONAL CMT PATIENT REGISTRY, CAPTURING NATURAL HISTORY DATA AND PROVIDING COMPREHENSIVE PATIENT-REPORTED, CLINICAL, DIGITAL, AND GENETIC DATASETS. GRIN PLAYS A CRITICAL ROLE IN CLINICAL TRIAL READINESS, SUPPORTING FEASIBILITY ASSESSMENTS, ENDPOINT DEVELOPMENT, AND PATIENT RECRUITMENT FOR THERAPEUTIC DEVELOPMENT PROGRAMS. GRIN INSIGHTS AND DATA INFRASTRUCTURE INFORM KEY SESSIONS AND WORKING GROUPS AT THE CMT CLINICAL TRIAL READINESS SUMMIT, HELPING RESEARCHERS AND INDUSTRY PARTNERS ADDRESS UNMET NEEDS AND STRENGTHEN FUTURE TRIAL STRATEGIES. THE CMT BIOBANK CONTINUES TO EXPAND ITS PATIENT SAMPLE COLLECTION, INCLUDING BLOOD, SALIVA, TISSUE, SKIN FIBROBLASTS, IPSCS, AND OTHER BIOSPECIMENS DONATED BY INDIVIDUALS WITH CMT. THESE SAMPLES ARE PROCESSED AND STORED UNDER STRICT QUALITY-CONTROLLED PROTOCOLS AND REMAIN SECURELY LINKED TO GRIN CLINICAL, DIGITAL, AND GENETIC DATA. THIS INTEGRATED RESOURCE SUPPORTS PRE-COMPETITIVE BIOMARKER DISCOVERY, MOLECULAR RESEARCH, AND DIGITAL BIOMARKER VALIDATION, ENABLING RESEARCHERS AND INDUSTRY PARTNERS TO ACCELERATE THERAPEUTIC DEVELOPMENT. FINDINGS AND COLLABORATIVE OPPORTUNITIES FROM THE BIOBANK ARE REGULARLY HIGHLIGHTED AT THE CMT CLINICAL TRIAL READINESS SUMMIT, WHERE CROSS-SECTOR PARTNERS ALIGN ON BIOMARKER PRIORITIES AND STRATEGIES TO ADVANCE FUTURE TREATMENTS.

Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending June 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since January 2001.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.