Maryland · Nonprofit
THE FIBROUS DYSPLASIA FOUNDATION
THE FIBROUS DYSPLASIA FOUNDATION (Maryland) receives grants from 22 organizations whose IRS filings report $320,182 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($86,668). 11 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $246k
- Funders on record
- 22
- Grants received
- $320k
- Net assets
- $6k
What The Fibrous Dysplasia Foundation does
Mission
The Fibrous Dysplasia Foundation serves people affected with fibrous dysplasia/mccune-albright syndrome through programs of research, education, awareness and support.
As stated on its FY2025 Form 990.
Programs
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.
$74,265 spent37% of program spendingAdvocacy 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.
$56,200 spent28% of program spendingEducation 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
$54,193 spent27% of program spendingFd/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.
$16,057 spent8% of program spending
The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $200,715.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $269k to $422k (+57%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2022 3%. Grants only. Government contracts and fees sit inside program revenue.
97% of THE FIBROUS DYSPLASIA FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2017 → 2023: the base broadened from 3 funders to 4 funders, grant income rose $26k → $28k.
7 of 22 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 69% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of THE FIBROUS DYSPLASIA FOUNDATION’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
THE FIBROUS DYSPLASIA FOUNDATION has a broad base — no single funder exceeds 27% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
73% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund THE FIBROUS DYSPLASIA FOUNDATION.
Largest funder’s share by year: 2017 50% · 2018 94% · 2019 38% · 2020 62% · 2021 51% · 2022 38% · 2023 44% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
21% of THE FIBROUS DYSPLASIA FOUNDATION's funders are still giving 3 years after their first grant; 50% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
69% of THE FIBROUS DYSPLASIA FOUNDATION's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $100k that is directly attributable, 100% of it comes from funders outside Maryland, across 10 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $220k arriving through sponsors registered in 6 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
THE FIBROUS DYSPLASIA FOUNDATION is better cushioned than half of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like THE FIBROUS DYSPLASIA FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Maryland
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
74% of spending goes to programs.
Governance
Public support
96%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 8 states
Screen this organization
A dated, signed PDF of the compliance screen for THE FIBROUS DYSPLASIA FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds THE FIBROUS DYSPLASIA FOUNDATION?
- THE FIBROUS DYSPLASIA FOUNDATION (Maryland) receives grants from 22 organizations whose IRS filings report $320,182 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($86,668). 11 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does THE FIBROUS DYSPLASIA FOUNDATION have?
- IRS filings report 22 organizations giving $320,182 in grants to THE FIBROUS DYSPLASIA FOUNDATION, 11 of which have funded it in more than one year.
- Who is the largest funder of THE FIBROUS DYSPLASIA FOUNDATION?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $86,668 in grants. The full list of funders is on this page.
- How can an organization like THE FIBROUS DYSPLASIA FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Maryland. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 22 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing