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International F O P Association Inc

EIN 59-2918100 · North Kansas City, MO

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

LegitimacyPassesRegistration and standingFinancial healthGood74 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO SUPPORT AND CONNECT THE GLOBAL FOP COMMUNITY WHILE DRIVING RESEARCH TOWARD TREATMENTS AND A CURE.

Income
$2.4 million
Spending
$3.1 million
Spent on programs
80%
Reserves
6.8 months of spending
Largest source of income
donations and private grants, 86%
Employees
0
Volunteers
150
Highest pay
$212,728, executive director

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: 74 out of 100.

  • Reserves

    28 of 35

    Spendable reserves would cover 6.8 months of spending.

  • Debt

    16 of 20

    It owes 18% of what it owns.

  • Living within its means

    0 of 15

    Spending exceeded income by 28% of income.

  • Income trend

    15 of 15

    Income rose 34% on the year before.

  • Spending floor

    15 of 15

    80% of spending went to programs and raising each dollar of donations cost 12 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.

  • Independent board

    25 of 25

    11 of 11 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. $1.7 million spent. SEE SCHEDULE OMEDICAL RESEARCH: WITH A VISION TO CURE FOP, THE MAJORITY OF THE IFOPA'S BUDGET IS SPENT ON RESEARCH PROGRAMS AND SERVICES. THE GREATEST INVESTMENT IS THE FOP REGISTRY WHICH IS THE ONLY REGISTRY FOR FOP PATIENTS IN THE WORLD AND A CRITICAL TOOL FOR SCIENTIFIC RESEARCH. THE IFOPA ALSO DEDICATES A SIGNIFICANT PORTION OF FUNDING TO RESEARCH GRANTS, INCLUDING GRANTS TO THE UNIVERSITY OF PENNSYLVANIA'S CENTER FOR RESEARCH IN FOP AND RELATED DISORDERS. ADDITIONALLY, THE IFOPA FUNDS GRANTS THROUGH THE IFOPA'S ACT (ACCELERATING CURES AND TREATMENTS) FOR FOP GRANT PROGRAM. THE IFOPA ALSO SUPPORTS THE FOP BIOBANK AND THE STOPFOP CLINICAL TRIAL AT THE UNIVERSITY OF AMSTERDAM.
  2. $701,063 spent. SEE SCHEDULE OEDUCATION AND SUPPORT PROGRAMS: SUPPORT, BOTH FUNCTIONAL AND EMOTIONAL, IS IMPERATIVE TO THE HEALTH OF THOSE LIVING WITH FOP AS WELL AS THEIR FAMILIES. STARTING IN 2018, THE IFOPA BEGAN A MAJOR EXPANSION OF OUR PROGRAMS AND SERVICES FOR FOP FAMILIES. OUR ONE-ON-ONE SUPPORT OFTEN BEGINS WHEN FAMILIES ARE NEWLY DIAGNOSED, OR LOOKING FOR TOOLS, TIPS AND HOME MODIFICATIONS TO HELP THEM LIVE MORE INDEPENDENTLY THROUGH OUR ABILITY TOOLBOX PROGRAM. THE IFOPA HAS DEVELOPED TWO PROGRAMS - RESILIENT LIVING AND THE ADVOCACY SERIES - TO SUPPORT THE MENTAL HEALTH AND PROBLEM-SOLVING SKILLS OF FOP FAMILIES. OUR SIGNATURE EVENT FOR FAMILIES IS THE FAMILY GATHERING WHERE 25-30 FAMILIES FROM ACROSS THE UNITED STATES COME TO LEARN, CONNECT AND INTERACT WITH FOP EXPERTS. THROUGH THE IFOPA'S INTERNATIONAL PRESIDENTS' COUNCIL WE WORK TO COORDINATE PROGRAMS AND SERVICES IN COUNTRIES AROUND THE WORLD. THE IFOPA ALSO STARTED A VARIETY OF ONLINE SUPPORT GROUPS FOR VARIOUS AUDIENCES INCLUDING ADULTS WITH FOP, CAREGIVERS AND BEREAVED FAMILIES, AND OFFERS PARTICIPANTS THE OPPORTUNITY TO STAY CONNECTED AND SUPPORT ONE ANOTHER. FINALLY, EDUCATING PATIENTS AND FAMILIES ABOUT CLINICAL STUDIES AND TRIALS IS CORE TO OUR MISSION TO ADVANCE THE DEVELOPMENT OF THE FIRST-EVER TREATMENTS FOR FOP.
  3. $115,702 spent. SEE SCHEDULE OPUBLIC AWARENESS: FOP IS AN ULTRA-RARE DISEASE. VERY FEW PEOPLE HAVE HEARD OF FOP, LET ALONE KNOW ALL THAT IT ENTAILS - INCLUDING HEALTH CARE PROFESSIONALS. INCREASING AWARENESS AMONG HEALTH CARE PROFESSIONALS IS CRITICAL TO ENSURE THAT PATIENTS ARE DIAGNOSED EARLY, AVOID SEVERE COMPLICATIONS CAUSED BY MISDIAGNOSIS, GET ON THE PATH TO THE BEST MEDICAL CARE AND HAVE AN OPPORTUNITY TO PARTICIPATE IN CLINICAL STUDIES AND TRIALS. THROUGH OUR WEBSITE WHERE WE LIST CONTINUING MEDICAL EDUCATION PROGRAMS ON FOP FOR HEALTH CARE PROFESSIONALS, THE FOP FAMILY GATHERING AND VARIOUS PARTNERSHIPS, THE IFOPA WORKS TO INCREASE AWARENESS AND EDUCATION OF FOP AMONG HEALTH CARE PROFESSIONALS. SINCE 2021, WE HAVE PARTNERED WITH MEMBERS OF THE INTERNATIONAL PRESIDENTS' COUNCIL TO LAUNCH A GLOBAL FOP AWARENESS DAY CAMPAIGN WHICH INCLUDED SOCIAL MEDIA POSTS AND VIDEOS SHARED AROUND THE WORLD DURING THE MONTH OF APRIL.

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 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 January 1989.

    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.