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The Marfan Foundation Inc

EIN 52-1265361 · Prt Washingtn, NY

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

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

SEE SCHEDULE O.THE MARFAN FOUNDATION DRIVES RESEARCH, EDUCATION AND SUPPORT AND BUILDS COMMUNITY TO IMPROVE OUTCOMES, SAVE LIVES AND EMPOWER ALL PEOPLE TO THRIVE WHO ARE LIVING WITH MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS SYNDROMES, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. *WE PURSUE THE MOST INNOVATIVE RESEARCH AND MAKE SURE THAT IT RECEIVES PROPER FUNDING. *WE FOSTER AN INFORMED PUBLIC AND EDUCATED PATIENT COMMUNITY TO INCREASE EARLY DIAGNOSIS AND ENSURE LIFE-SAVING TREATMENT. *WE PROVIDE DEDICATED SUPPORT TO FAMILIES, CAREGIVERS, AND HEALTHCARE PROVIDERS.

Income
$7.8 million
Spending
$7.6 million
Spent on programs
83%
Reserves
14.9 months of spending
Largest source of income
donations and private grants, 89%
Employees
30
Volunteers
510
Highest pay
$502,741, pres/ceo

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

Strong: 100 out of 100.

  • Reserves

    35 of 35

    Spendable reserves would cover 14.9 months of spending.

  • Debt

    20 of 20

    It owes 14% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 3% of income.

  • Income trend

    15 of 15

    Income rose 42% on the year before.

  • Spending floor

    15 of 15

    83% of spending went to programs and raising each dollar of donations cost 12 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.

  • Independent board

    25 of 25

    24 of 24 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 (3)
  1. $2.8 million spent. SEE SCHEDULE O.RESEARCH -EXPENSES $2,811,733, GRANTS $1,512,774, REVENUE $0THE MARFAN FOUNDATION ADVANCES RESEARCH THAT SAVES LIVES AND DRAMATICALLY ENHANCES THE QUALITY OF LIFE FOR PEOPLE LIVING WITH MARFAN SYNDROME, LOEYS-DIETZ SYNDROME, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. OUR RESEARCH PROGRAM HAS ADVANCED SCIENCE SINCE 1981, FUNDING 176 RESEARCH GRANTS SINCE 1986. THE RESEARCH WE'VE SUPPORTED HAS HELPED REDUCE LIFE-THREATENING PROBLEMS, IDENTIFIED TREATMENTS THAT HAVE IMPROVED QUALITY OF LIFE, AND HELPED PEOPLE LIVE LONGER LIVES. THE MARFAN FOUNDATION COLLABORATES WITH THE RESEARCH COMMUNITY AND ORGANIZATIONS TO IDENTIFY NEW THERAPIES AND TREATMENTS DOMESTICALLY AND AROUND THE GLOBE. THE FOUNDATION'S TWO-YEAR AND FOUR-YEAR GRANTS MECHANISMS HELP ENSURE A PIPELINE OF DEDICATED FELLOWS, NEW INVESTIGATORS, AND FACULTY MEMBERS WHO ARE COMMITTED TO THE SCIENTIFIC DISCOVERY NECESSARY TO ADVANCE UNDERSTANDING OF RARE DISEASES. THE FOUNDATION CONVENES NATIONAL AND INTERNATIONAL RESEARCH CONFERENCES, FACILITATES COLLABORATIONS AMONG RESEARCHERS AND RESEARCH INSTITUTIONS, AND HOLDS SYMPOSIUMS IN THE US AND ABROAD TO FACILITATE THE SHARING OF RESEARCH FINDINGS THAT EXPEDITE PROGRESS. THE MARFAN FOUNDATION PARTNERS WITH GOVERNMENT AGENCIES AND OTHER HEALTHCARE ORGANIZATIONS TO ADVANCE ITS RESEARCH GOALS AND ADVOCATE FOR ADDITIONAL RESEARCH FUNDING FROM THE GOVERNMENT.
  2. $2.1 million spent. SEE SCHEDULE O.SUPPORT -EXPENSES $2,092,564, GRANTS $12,297, REVENUE $32,885THE MARFAN FOUNDATION OFFERS CUTTING-EDGE FACT-BASED INFORMATION ABOUT MARFAN, LOEYS-DIETZ, VASCULAR EHLERS-DANLOS (VEDS), AND OTHER GENETIC AORTIC AND VASCULAR CONDITIONS. WE REACH A WORLDWIDE AUDIENCE DIGITALLY AND THROUGH IN-PERSON PROGRAMMING. THROUGH OUR INSTITUTIONAL DIRECTORY, THE MARFAN FOUNDATION CONNECTS THOUSANDS OF INDIVIDUALS AND FAMILIES TO MORE THAN 70 U.S. - AND A GROWING NUMBER OF GLOBAL - INSTITUTIONS OFFERING EXPERTISE IN MARFAN, LDS, VEDS, AND RELATED GENETIC AORTIC AND VASCULAR CONDITIONS. WE PROVIDE EXPANSIVE INFORMATION FOR PATIENTS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS THROUGH OUR WEBSITE AND HELPLINE, ACCESSIBLE VIA PHONE AND EMAIL, AS WELL AS WEBINARS ON MEDICAL TOPICS, MENTAL HEALTH ISSUES, SUPPORT GROUPS, AND QUALITY OF LIFE. PROGRAMS ARE SCHEDULED AT VARIOUS TIMES TO INCREASE ACCESS ACROSS TIME ZONES (US AND ABROAD). AN INCREASING NUMBER OF RESOURCES AND EDUCATIONAL OPPORTUNITIES ARE OFFERED IN SPANISH LANGUAGE AND OTHER LANGUAGES TO BETTER SERVE PEOPLE LIVING WITH GENETIC AORTIC CONDITIONS AND THEIR SUPPORT NETWORKS. THE FOUNDATION IS FOCUSED ON ENSURING EVERYONE HAS ACCESS TO QUALITY CARE AND FOSTERING BELONGING FOR ALL.
  3. $1.4 million spent. SEE SCHEDULE O.EDUCATION - EXPENSES $1,380,263, GRANTS $4,647, REVENUE $1,505THE MARFAN FOUNDATION AND ITS DIVISIONS (THE LOEYS-DIETZ SYNDROME FOUNDATION, THE VEDS MOVEMENT, AND THE GENETIC AORTIC NETWORK) ARE THE PREEMINENT PROVIDERS OF INFORMATION AND PROGRAMS FOR PEOPLE LIVING WITH GENETIC AORTIC AND VASCULAR CONDITIONS, THEIR LOVED ONES, MEDICAL PROFESSIONALS, RESEARCHERS, AND THE GENERAL PUBLIC. WE REACH ONE MILLION PEOPLE ANNUALLY WITH OUR EDUCATIONAL RESOURCES, AND MORE THAN 7 MILLION IN THE SOCIAL MEDIA SPACE ALONE. THE MARFAN FOUNDATION OFFERS A WEALTH OF MEDICAL AND QUALITY-OF-LIFE INFORMATION IN MANY LANGUAGES THROUGH ITS HELP & RESOURCE CENTER, WHICH REACHES 5,000 PEOPLE EVERY YEAR -- DIRECTED BY IN-HOUSE NURSES AND A BILINGUAL MANAGER WHO ANSWER QUESTIONS BY PHONE AND EMAIL, AND THROUGH ITS COMPREHENSIVE WEBSITE, WHICH IS AVAILABLE IN MORE THAN 25 LANGUAGES. THE FOUNDATION OFFERS SPECIALIZED RESOURCES FOR CHILDREN, TEENS, PARENTS, TEACHERS, AND SCHOOL NURSES. IN ADDITION, THE FOUNDATION IS FOCUSED ON MENTAL HEALTH, OFFERING A RANGE OF OPPORTUNITIES, INCLUDING VIRTUAL SUPPORT GROUPS, VIDEOS, WEBINARS, AND OTHER CONTENT. THE MARFAN FOUNDATION FOCUSES ON EXPANDING HEALTH EQUITY AND ACCESS TO CARE FOR THE CONSTITUENTS WE SERVE GLOBALLY.

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 November 1982.

    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.

  7. Could it be confused with another charity? Worth knowing.

    A much larger organization has a similar name: The Foundation (Houston, TX), EIN 92-0742101. If that is the one you meant, check the EIN before giving.

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