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Fibrous Dysplasia Foundation Inc

EIN 02-0715210 · Bethesda, MD

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

LegitimacyPassesRegistration and standingFinancial healthWeak30 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE FIBROUS DYSPLASIA FOUNDATION SERVES PEOPLE AFFECTED WITH FIBROUS DYSPLASIA/MCCUNE-ALBRIGHT SYNDROME THROUGH PROGRAMS OF RESEARCH, EDUCATION, AWARENESS AND SUPPORT.

Income
$245,764
Spending
$270,098
Spent on programs
74%
Reserves
0.3 months of spending
Largest source of income
donations and private grants, 97%
Employees
3
Volunteers
100
Highest pay
$88,857, executive di

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

Weak: 30 out of 100. Higher than 5% of charities in its peer group (diseases, under $250k).

  • Reserves

    4 of 35

    Spendable reserves would cover 0.3 months of spending.

  • Debt

    2 of 20

    It owes 98% of what it owns.

  • Living within its means

    4 of 15

    Spending exceeded income by 10% of income.

  • Income trend

    5 of 15

    Income fell 24% on the year before.

  • Spending floor

    15 of 15

    74% of spending went to programs and raising each dollar of donations cost 9 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 91% of charities in its peer group (diseases, under $250k).

  • 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.

  • 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 (5)
  1. $74,265 spent. RESEARCH PROGRAMS: -IN 2025, TEAM FD/MAS AWARDED TWO RESEARCH GRANTS TOTALING OVER 120,000 TO ADVANCE FD/MAS SPECIFIC RESEARCH: --DR. ARIANE ZAMARIOLI OF RIBEIRAO PRETO MEDICAL SCHOOL RECEIVED 40,234.00 FOR HER PROJECT ELUCIDATING A LINK BETWEEN MICROFRACTURES AND FIBROUS DYSPLASIA BONE PAIN IN MICE. --DR. J. SILVIO GUTKIND OF THE UNIVERSITY OF CALIFORNIA, SAN DIEGO, RECEIVED 80,468.00 FOR HIS PROJECT TARGETING GNAS-DRIVEN PATHWAY FOR PRECISION THERAPY OF FIBROUS DYSPLASIA. -HOSTED TWO RESEARCH UPDATES --DR. MARC WEIN OF MASS GENERAL HOSPITAL SHARED FINDINGS FROM HIS PRMRP- FUNDED PROJECT, FOCUSING ON THERAPEUTIC CONCEPTS THAT HAVE EMERGED FROM HIS BASIC SCIENCE STUDIES. --IN JUNE, ALISON BOYCE SHARED RESEARCH UPDATES FROM HER PHASE TWO CLINICAL TRIAL OF BUROSUMAB, WHICH HELPS REGULATE PHOSPHATE LEVELS -SUPPORT AND MAINTENANCE OF THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY. RESEARCH PROGRAMS: -IN 2025, TEAM FD/MAS AWARDED TWO RESEARCH GRANTS TOTALING OVER 120,000 TO ADVANCE FD/MAS SPECIFIC RESEARCH: --DR. ARIANE ZAMARIOLI OF RIBEIRAO PRETO MEDICAL SCHOOL RECEIVED 40,234.00 FOR HER PROJECT ELUCIDATING A LINK BETWEEN MICROFRACTURES AND FIBROUS DYSPLASIA BONE PAIN IN MICE. --DR. J. SILVIO GUTKIND OF THE UNIVERSITY OF CALIFORNIA, SAN DIEGO, RECEIVED 80,468.00 FOR HIS PROJECT TARGETING GNAS-DRIVEN PATHWAY FOR PRECISION THERAPY OF FIBROUS DYSPLASIA. -HOSTED TWO RESEARCH UPDATES --DR. MARC WEIN OF MASS GENERAL HOSPITAL SHARED FINDINGS FROM HIS PRMRP- FUNDED PROJECT, FOCUSING ON THERAPEUTIC CONCEPTS THAT HAVE EMERGED FROM HIS BASIC SCIENCE STUDIES. --IN JUNE, ALISON BOYCE SHARED RESEARCH UPDATES FROM HER PHASE TWO CLINICAL TRIAL OF BUROSUMAB, WHICH HELPS REGULATE PHOSPHATE LEVELS -SUPPORT AND MAINTENANCE OF THE FD/MAS PATIENT REGISTRY, AN IRB-APPROVED STUDY.
  2. $56,200 spent. ADVOCACY PROGRAMS: -ALLIANCE ADVOCATES SECURED ANOTHER YEAR OF ACCESS TO THE PEER-REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP) AND 150 MILLION OF POSSIBLE RESEARCH FUNDS -ADRIENNE MCBRIDE SAT ON THE GLOBAL GENES CORPORATE ALLIANCE COMMITTEE THAT DEVELOPED A NEW WHITE PAPER, "EARLY AND OFTEN: REIMAGINING PATIENT COMMUNITY ENGAGEMENT TO IMPROVE CLINICAL TRIALS FEASIBILITY," WHICH SHOWS THE TRANSFORMATIVE ROLE OF PATIENT ADVOCACY ORGANIZATIONS IN RARE DISEASE DRUG DEVELOPMENT. -FACES OF FD/MAS IS AN FD/MAS ALLIANCE VIDEO PROJECT ENVISIONED AND GUIDED BY THE PATIENT ADVISORY COUNCIL (PAC). THE PROJECT AIMS TO CAPTURE THE DIVERSE EXPERIENCES OF THOSE IN THE FIBROUS DYSPLASIA, MCCUNE-ALBRIGHT SYNDROME (FD/MAS) COMMUNITY. VIDEOS WERE RELEASED THROUGHOUT 2024 AND 2025. ADVOCACY PROGRAMS: -ALLIANCE ADVOCATES SECURED ANOTHER YEAR OF ACCESS TO THE PEER-REVIEWED MEDICAL RESEARCH PROGRAM (PRMRP) AND 150 MILLION OF POSSIBLE RESEARCH FUNDS -ADRIENNE MCBRIDE SAT ON THE GLOBAL GENES CORPORATE ALLIANCE COMMITTEE THAT DEVELOPED A NEW WHITE PAPER, "EARLY AND OFTEN: REIMAGINING PATIENT COMMUNITY ENGAGEMENT TO IMPROVE CLINICAL TRIALS FEASIBILITY," WHICH SHOWS THE TRANSFORMATIVE ROLE OF PATIENT ADVOCACY ORGANIZATIONS IN RARE DISEASE DRUG DEVELOPMENT. -FACES OF FD/MAS IS AN FD/MAS ALLIANCE VIDEO PROJECT ENVISIONED AND GUIDED BY THE PATIENT ADVISORY COUNCIL (PAC). THE PROJECT AIMS TO CAPTURE THE DIVERSE EXPERIENCES OF THOSE IN THE FIBROUS DYSPLASIA, MCCUNE-ALBRIGHT SYNDROME (FD/MAS) COMMUNITY. VIDEOS WERE RELEASED THROUGHOUT 2024 AND 2025.
  3. $54,193 spent. EDUCATION PROGRAM: -WE EMPOWER THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES AND SHARE THESE RESOURCES ON THE FD/MAS ALLIANCE'S WEBSITE AND YOUTUBE CHANNEL. WE PRODUCE AND SHARE EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS." -MONTHLY WEB PROGRAMMING, DESIGNED AND HOSTED BY FD/MAS ALLIANCES PATIENT ADVISORY COUNCIL, OFFERS AN OPPORTUNITY FOR PATIENTS AND CAREGIVERS TO CONNECT, SHARE EXPERIENCES, AND ASK QUESTIONS IN A SAFE AND SUPPORTIVE SPACE. THIS YEAR, PROGRAMS COVERED TOPICS FOCUSED ON QUALITY OF LIFE AS WELL AS MEDICAL AND EDUCATIONAL PROGRAMMING: LIVING INDEPENDENTLY WITH FD/MAS NAVIGATING RELATIONSHIPS WITH FD/MAS ENCOURAGING SELF-ADVOCACY TOOLS FOR TOUGH TIMES CLINICAL TRIALS 101 PSYCHOLOGY IN PEDIATRIC CARE EDUCATION PROGRAM: -WE EMPOWER THE FD/MAS COMMUNITY WITH THE BEST EDUCATIONAL RESOURCES AND SHARE THESE RESOURCES ON THE FD/MAS ALLIANCE'S WEBSITE AND YOUTUBE CHANNEL. WE PRODUCE AND SHARE EDUCATIONAL WEBINARS FOR PATIENTS AND CAREGIVERS." -MONTHLY WEB PROGRAMMING, DESIGNED AND HOSTED BY FD/MAS ALLIANCES PATIENT ADVISORY COUNCIL, OFFERS AN OPPORTUNITY FOR PATIENTS AND CAREGIVERS TO CONNECT, SHARE EXPERIENCES, AND ASK QUESTIONS IN A SAFE AND SUPPORTIVE SPACE. THIS YEAR, PROGRAMS COVERED TOPICS FOCUSED ON QUALITY OF LIFE AS WELL AS MEDICAL AND EDUCATIONAL PROGRAMMING: LIVING INDEPENDENTLY WITH FD/MAS NAVIGATING RELATIONSHIPS WITH FD/MAS ENCOURAGING SELF-ADVOCACY TOOLS FOR TOUGH TIMES CLINICAL TRIALS 101 PSYCHOLOGY IN PEDIATRIC CARE
  4. $16,057 spent. FD/MAS ALLIANCE, IN ADDITION TO ITS OTHER PROGRAM SERVICES: - MAINTAINS A COMPREHENSIVE, UP-TO-DATE REPOSITORY OF INFORMATION FOR PATIENTS, CAREGIVERS, AND MEDICAL PRACTITIONERS, INCLUDING RECENT RESEARCH PUBLICATIONS, DIAGNOSIS AND TREATMENT GUIDELINES, RELEVANT FUNDING OPPORTUNITIES FOR BASIC AND CLINICAL INVESTIGATORS, AND INFORMATION ON ONGOING CLINICAL TRIALS IN FD/MAS. - EXPANDS AND STRENGTHENS THE NETWORK OF FD/MAS RESEARCHERS AND PATIENT ADVOCATES WORLDWIDE THROUGH EDUCATION, COMMUNICATIONS, AND ALLIANCE- BUILDING INITIATIVES, INCLUDING A BIENNIAL CONFERENCE. - REMOTELY ATTENDS OR, WHEN SUITABLE, TRAVELS TO BOTH DOMESTIC AND INTERNATIONAL SCIENTIFIC GATHERINGS TO ADVOCATE FOR FD/MAS RESEARCH OPPORTUNITIES TO BROADEN THE NETWORK OF INVOLVED RESEARCHERS AND OTHER STAKEHOLDERS WORKING ON POTENTIAL THERAPIES. - PROVIDES MENTORING AND COMMUNITY BUILDING AMONG OTHER FD/MAS PATIENT ORGANIZATIONS TO ENHANCE THE EFFECTIVENESS AND COORDINATION OF THESE GROUPS WORLDWIDE.
  5. FD/MAS ALLIANCE, IN ADDITION TO ITS OTHER PROGRAM SERVICES: - MAINTAINS A COMPREHENSIVE, UP-TO-DATE REPOSITORY OF INFORMATION FOR PATIENTS, CAREGIVERS, AND MEDICAL PRACTITIONERS, INCLUDING RECENT RESEARCH PUBLICATIONS, DIAGNOSIS AND TREATMENT GUIDELINES, RELEVANT FUNDING OPPORTUNITIES FOR BASIC AND CLINICAL INVESTIGATORS, AND INFORMATION ON ONGOING CLINICAL TRIALS IN FD/MAS. - EXPANDS AND STRENGTHENS THE NETWORK OF FD/MAS RESEARCHERS AND PATIENT ADVOCATES WORLDWIDE THROUGH EDUCATION, COMMUNICATIONS, AND ALLIANCE- BUILDING INITIATIVES, INCLUDING A BIENNIAL CONFERENCE. - REMOTELY ATTENDS OR, WHEN SUITABLE, TRAVELS TO BOTH DOMESTIC AND INTERNATIONAL SCIENTIFIC GATHERINGS TO ADVOCATE FOR FD/MAS RESEARCH OPPORTUNITIES TO BROADEN THE NETWORK OF INVOLVED RESEARCHERS AND OTHER STAKEHOLDERS WORKING ON POTENTIAL THERAPIES. - PROVIDES MENTORING AND COMMUNITY BUILDING AMONG OTHER FD/MAS PATIENT ORGANIZATIONS TO ENHANCE THE EFFECTIVENESS AND COORDINATION OF THESE GROUPS WORLDWIDE.

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 September 7, 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 September 30, 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 September 10, 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 September 7, 2026.

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

    Recognized by the IRS since October 2005.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated September 7, 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 7, 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.