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Hypertrophic Cardiomyopathy Association

EIN 41-1855605 · Denville, NJ

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

LegitimacyPassesRegistration and standingFinancial healthGood89 out of 100GovernanceStrong95 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO PROVIDE SUPPORT, ADVOCACY AND EDUCATION TO PATIENTS, FAMILIES, THE MEDICAL COMMUNITY AND THE PUBLIC ABOUT HYPERTROPHIC CARDIOMYOPATHY, WHILE SUPPORTING RESEARCH AND FOSTERING THE DEVELOPMENT OF TREATMENTS.

Income
$2.0 million
Spending
$1.4 million
Spent on programs
74%
Reserves
9.8 months of spending
Largest source of income
donations and private grants, 92%
Employees
17
Volunteers
107
Highest pay
$137,183, ceo/vice chair

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Good: 89 out of 100. Higher than 65% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    28 of 35

    Spendable reserves would cover 9.8 months of spending.

  • Debt

    16 of 20

    It owes 18% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 26% of income.

  • Income trend

    15 of 15

    Income rose 48% on the year before.

  • Spending floor

    15 of 15

    74% of spending went to programs and raising each dollar of donations cost 3 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 95 out of 100. Higher than 55% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    11 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

    0 of 5

    Reports no independent review process for its chief executive's pay.

  • 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 December 31, 2024, 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 (3)
  1. $164,854 spent. HCMA PATIENT INTAKE AND NAVIGATION SERVICES:THE HCMA ALLOWS EACH INDIVIDUAL DIAGNOSED WITH THE CONDITION TO CONTACT THE OFFICE (PHONE, EMAIL , IN PERSON, OR ONLINE THROUGH VIDEO CONFERENCING) AND PARTICIPATE IN AN INTAKE CALL, WHICH THEN ALLOWS FOR UNDERSTANDING WHERE THE INDIVIDUAL IS COMING TO US REGARDING THEIR DISEASE PROCESS, ACCESS TO SPECIALTY CARE, EMOTIONAL SUPPORT, ADVOCACY SERVICES, AND MORE. THIS IS A VERY LABOR-INTENSIVE PORTION OF OUR WORK, REQUIRING INDIVIDUAL COMMUNICATION AND FOLLOW-UP. WE HAVE USED THIS MODEL OF SERVICE SINCE OUR FOUNDING IN 1996. IT HAS EVOLVED AS THE ORGANIZATION HAS, AND TO DATE, 20,000 INDIVIDUALS HAVE PARTICIPATED IN THE PROCESS.
  2. $123,650 spent. HCMA RECOGNIZED CENTER OF EXCELLENCE PROGRAM: HYPERTROPHIC CARDIOMYOPATHY IS A COMPLICATED DIAGNOSIS REQUIRING SPECIALIST MANAGEMENT STRATEGIES. HCM IMPACTS AN ESTIMATED ONE IN 250 PEOPLE IN THE GENERAL POPULATION. IT IS CURRENTLY SIGNIFICANTLY UNDERDIAGNOSED, WITH ONLY AN ESTIMATED 150,000 INDIVIDUALS IN THE UNITED STATES CURRENTLY IN TREATMENT FOR THE DISEASE. BECAUSE SEVERAL RELATED HCM SPECTRUM DISORDERSSUCH AS RASOPATHIES, CARDIAC AMYLOIDOSIS, FABRY DISEASE, AND DANON DISEASECAN MIMIC OR OVERLAP WITH HCM, ACCURATE DIFFERENTIAL DIAGNOSIS IS CRITICAL TO ENSURE THAT PATIENTS RECEIVE THE CORRECT TREATMENT AND MANAGEMENT STRATEGY. CARE FOR HCM REQUIRED MULTIPLE SUBSPECIALTY CARE MODALITIES, INCLUDING BUT NOT LIMITED TO IMAGING, CARDIOLOGY, INTERVENTIONAL CARDIOLOGY, ELECTROPHYSIOLOGY, CARDIAC SURGERY, GENETICS, PSYCHOSOCIAL SERVICES, AND CARDIAC OVERSIGHT FOR NONCARDIAC PROCEDURES, INCLUDING PREGNANCY, ORTHOPEDIC ISSUES, AND OTHER GENERAL MEDICAL NEEDS. THE HCMA HAS 56 RECOGNIZED CENTERS OF EXCELLENCE IN THE UNITED STATES, WITH 15 ADDITIONAL CENTERS UNDER REVIEW AND INTERNATIONAL PROGRAMMING BEING DEVELOPED. CREATION OF THESE PROGRAMS TAKES RELATIONSHIP BUILDING, PROGRAM BUILDING, AND ADMINISTRATIVE SUPPORT. PATIENTS CARED FOR IN THIS MODEL HAVE BETTER OUTCOMES THAN THOSE TREATED IN LOW-VOLUME CENTERS. THIS PROGRAM DIRECTLY LEADS TO PATIENT SAFETY AND OPTIMAL OUTCOMES.
  3. $40,942 spent. PATIENT EDUCATION BIGHEARTED WARRIOR TOUR PROGRAM: LAUNCHED IN 2020, THIS EDUCATIONAL SERIES BRINGS TOGETHER THOUGHT LEADERS IN HCM PATIENT CARE AND ADVOCACY TO LEARN COLLECTIVELY, SHARE EXPERIENCES, AND WORK TOWARD POSITIVE CHANGE. SINCE ITS INCEPTION, THE PROGRAM HAS OFFERED MORE THAN 60 WEBINARS AND FOUR IN-PERSON MEETINGS, COVERING A WIDE RANGE OF TOPICS INCLUDING PEDIATRICS, GENETICS, SURGERY, AND MORE. THESE PROGRAMS ARE FREE OF CHARGE AND ENSURE THAT EVERY PATIENT HAS ACCESS TO VITAL EDUCATIONAL OPPORTUNITIES, REGARDLESS OF THEIR GEOGRAPHIC LOCATION.

Source: Form 990 for the year ending December 31, 2024, 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? Worth knowing.

    Status was revoked on May 15, 2014 for not filing returns for three years, and reinstated on May 15, 2014.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 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 December 2024.

    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 July 2015.

    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 November 4, 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.