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The Familial Hypercholesterolemia Foundation

EIN 45-4597425 · Fern Bch, FL

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

LegitimacyPassesRegistration and standingFinancial healthGood89 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

The Family Heart Foundation was incorporated February 17, 2012 as a California nonprofit corporation, originally as The Familial Hypercholesterolemia Foundation (the "FH Foundation"). This remains the legal name, with "Family Heart Foundation" added dba or doing business as. The name of the organization was changed in December of 2021 to reflect a broader mission. The Family Heart Foundation is a patient-centered nonprofit dedicated to improving the diagnosis and management of inherited lipid disorders, including familial hypercholesterolemia ("FH") and elevated lipoprotein (a) ("Lp(a). Through research, advocacy, and education, the Family Heart Foundation drives change, and empowers families to navigate their own health.

Income
$8.9 million
Spending
$7.8 million
Spent on programs
88%
Reserves
7.5 months of spending
Largest source of income
donations and private grants, 92%
Employees
22
Volunteers
374
Highest pay
$403,436, ceo/board member

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 7.5 months of spending.

  • Debt

    16 of 20

    It owes 28% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 12% of income.

  • Income trend

    15 of 15

    Income rose 36% on the year before.

  • Spending floor

    15 of 15

    88% 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: 100 out of 100. Higher than 61% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    6 of 7 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 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. $3.1 million spent. RESEARCH: The Family Heart Foundation conducts independent, observational and implementation research. Our major research initiatives involve characterizing familial hypercholesterolemia through our national CASCADE FH Registry, analyzing current screening rates, diagnosis and burden of disease of high lipoprotein(a), FH, and high LDL-C through our Family Heart Database and quality improvement research through FIND-FH & FIND-Lp(a). We have published over 50 peer-reviewed manuscripts, most recently in the European Heart Journal entitled "Lipoprotein(a) and recurrent atherosclerotic cardiovascular events: the US Family Heart Database" (May 7, 2025).
  2. $2.3 million spent. ADVOCACY: The Family Heart Foundation provides individualized resources to those living with genetic dyslipidemias through our Care Navigation Center. We also engage and support communities through on-site community education and screening programs. In addition, we raise awareness of these highly undiagnosed conditions through national media and awareness campaigns, The Family Heart Foundation established FH Awareness Day in 2012 and Lp(a) Awareness Day in 2021. We also work at a policy level to represent and elevate the voices of our community and improve care.
  3. $1.5 million spent. EDUCATION: As an honest broker and neutral convener, the Family Heart Foundation provides education and tools to diverse audiences, from patients (through programs like Cholesterol Connect) to healthcare professionals, policymakers and payers (through programs like GOAL and Lp(a) AWARE). We host an annual scientific meeting, the Family Heart Global Summit and hold educational symposia at primary care medical conferences across the country.

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? 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 December 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 May 2012.

    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.