Maryland · Nonprofit
OSTEOGENESIS IMPERFECTA FOUNDATION
OSTEOGENESIS IMPERFECTA FOUNDATION (Maryland) receives grants from 62 organizations whose IRS filings report $2,983,065 to it, the largest being RANDOLPH D ROUSE FOUNDATION INC ($1,300,000). 39 of them have funded it in more than one year.
- Revenue FY2025
- $2.6M
- Funders on record
- 62
- Grants received
- $3.0M
- Net assets
- $1.4M
What Osteogenesis Imperfecta Foundation does
Mission
Our mission is to improve the quality of life for people affected by oi through research to find treatments and a cure, education, awareness, and mutual support. There are at least four distinct forms of osteogenesis imperfecta representing extreme variations in severity and affecting 20,000 to 40,000 people in the united states.
As stated on its FY2025 Form 990.
Programs
Research and professional education: oif scientific meeting - the 24th annual oi foundation scientific meeting was held in chicago, illinois on april 9-11, 2025. The meeting was co-chaired by dr. Ronit marom (baylor college of medicine) and dr. Roy morello (university of arkansas), both of whom are past oif michael geisman recipients. This year's meeting, titled, translating discoveries into therapies, began on wednesday evening with a keynote address from dr. Nick bishop (school of medicine and population health, university of sheffield, uk) who discussed drug repurposing in the treatment of oi. Oi clinic and bone health town hall meetings - the oif continues to host two oi clinic and bone health town hall meetings each year. These meetings provide an opportunity for medical professionals who are treating patients with oi, and those who are interested in bone health, to come together to learn about oif resources and connect and collaborate. Attendance ranges from 50-100+ per meeting. Virtual community calls - in february 2025, the oif held a research update with representatives from amgen on their upcoming phase 3 clinical trial for romosuzamab. In this virtual session with 45…
$508,325 spentof which $215,021 as grants25% of program spendingEducation and support:adult health initiatives - the oif continues to prioritize our work to better understand the impact of oi as people age, and ways we can best serve our adult community. In addition to producing resources like the oi adult health toolkit to help our adult community manage their care, the oif partners with clinicians, researchers, and other rare bone disease groups to continue to learn more about how oi impacts the body as a person ages and important issues facing the adult community like the transition of care from pediatric to adult care and gaps in adult care. Work continues on the oif's somewhere to go for adults with childhood-onset rare disease project, which aims to identify and address the challenges and solutions for transitioning patients from pediatric to adult care, particularly for those with rare and complex health issues. Support group program - community feedback has indicated a desire for support groups tailored to specific demographics (e.g., women with oi, parents of children with oi, teens, etc.). This feedback has been voiced during regional support group meetings, either verbally or through chat, as well as outside of these meetings…
$897,262 spentof which $173,681 as grants44% of program spendingNational and regional conferences: national conference - the next oif national conference will be held on july 23-26, 2026, at the rosen center in orlando, florida. The rosen center has an astounding 69 ada roll-in shower sleeping rooms. Planning for the conference has begun with listening sessions for young adults to learn how the oif can best serve their unique needs. Regional conferences - oif regional conferences bring information to local communities throughout the us and canada. The oif hosts 3-4 regional conferences each year. Oif regional conferences are one-day in-person meetings held in cities around the us meant to help community members better understand and treat oi. Regional conferences offer an intimate in-person educational experience than the national conference and historically have attracted more diverse audiences with less exposure to the oif's programs and events. Each meeting draws about 100 attendees, most of whom have never attended an oif event before. In the last year, the oif hosted regional conferences in atlanta, ga, denver, co and portland, or.
$407,863 spent$215,927 earned by the program20% of program spendingOther program services, not described on the e-filed return.
$223,993 spent$44,288 earned by the program11% of program spending
The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $2,037,443.
The organization over time
Each line starts at 100 in 2019, so what you read is the shape rather than the size: 150 means half as much again as 2019, 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 $1.7M to $2.2M (+28%).
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: 2019 5% · 2020 8% · 2021 20% · 2022 10% · 2023 30% · 2024 15% · 2025 8%. Grants only. Government contracts and fees sit inside program revenue.
82% of OSTEOGENESIS IMPERFECTA FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 7 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.
Chief executive
Tracy Smith Hart
Chief executive officer
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 13 funders to 23 funders, grant income rose $150k → $559k.
13 of 62 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 27% 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 OSTEOGENESIS IMPERFECTA FOUNDATION’s funders (the co-funder graph). Top 30 of 62 funders by total. 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
OSTEOGENESIS IMPERFECTA FOUNDATION leans on a few funders — its largest provides 44% of grant income and the top three 65%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
32% 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 OSTEOGENESIS IMPERFECTA FOUNDATION.
Largest funder’s share by year: 2017 38% · 2018 29% · 2019 42% · 2020 43% · 2021 47% · 2022 65% · 2023 60% — growing more concentrated.
“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
37% of OSTEOGENESIS IMPERFECTA FOUNDATION's funders are still giving 3 years after their first grant; 63% 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
OSTEOGENESIS IMPERFECTA FOUNDATION draws 99% of its grant income from funders outside Maryland, across 18 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $816k arriving through sponsors registered in 11 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
OSTEOGENESIS IMPERFECTA FOUNDATION's funding base is broadening — from 13 funders to 23 as grant income climbed.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Government funding OSTEOGENESIS IMPERFECTA FOUNDATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $37k on record.
- Department of Health and Human Services$37k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like OSTEOGENESIS IMPERFECTA 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
78% of spending goes to programs.
Governance
Public support
53%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 35 states
Screen this organization
A dated, signed PDF of the compliance screen for OSTEOGENESIS IMPERFECTA 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 OSTEOGENESIS IMPERFECTA FOUNDATION?
- OSTEOGENESIS IMPERFECTA FOUNDATION (Maryland) receives grants from 62 organizations whose IRS filings report $2,983,065 to it, the largest being RANDOLPH D ROUSE FOUNDATION INC ($1,300,000). 39 of them have funded it in more than one year.
- How many funders does OSTEOGENESIS IMPERFECTA FOUNDATION have?
- IRS filings report 62 organizations giving $2,983,065 in grants to OSTEOGENESIS IMPERFECTA FOUNDATION, 39 of which have funded it in more than one year.
- Who is the largest funder of OSTEOGENESIS IMPERFECTA FOUNDATION?
- RANDOLPH D ROUSE FOUNDATION INC is the largest funder on record, with $1,300,000 in grants. The full list of funders is on this page.
- How can an organization like OSTEOGENESIS IMPERFECTA 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 2019–2025), and the filings of 62 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 22, 2026. What this page cannot tell you · view filing