Pennsylvania · Nonprofit
BARDET BIEDL SYNDROME FOUNDATION
BARDET BIEDL SYNDROME FOUNDATION (Pennsylvania) receives grants from 7 organizations whose IRS filings report $909,143 to it, the largest being Silicon Valley Community Foundation ($800,000). 4 of them have funded it in more than one year, and 95% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $397k
- Funders on record
- 7
- Grants received
- $909k
- Net assets
- $608k
What Bardet Biedl Syndrome Foundation does
Mission
The organization's mission is to build a community of support for individuals and families, provide information about bardet biedl syndrome, and promote science and research to improve the lives of individuals with bardet biedl syndrome.
As stated on its FY2025 Form 990.
Programs
Research the organization provided research grants to support the cribbs registry. Organization leadership attended scientific conferences to advance research efforts relevant to the community including embo cilia in october 2024 and the chan zuckerberg initiative rare as one summit in may 2025. President tim ogden co-authored a peer reviewed publication on effective collaboration between patient groups and researchers.
$79,365 spentof which $77,375 as grants73% of program spendingCommunity support the organization connected families and shared information on research, therapies, and care for bardet biedl syndrome. This included hosting a conference for approximately 200 people in july 2024, and a series of webinars and local meetings for members and the general public.
$29,544 spent27% of program spending
The 2 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $108,909.
The organization over time
Each line starts at 100 in 2021, so what you read is the shape rather than the size: 150 means half as much again as 2021, 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 2024 to 2025, from $379k to $609k (+61%).
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.
100% of BARDET BIEDL SYNDROME FOUNDATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 5 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
2018 → 2023: the base broadened from 1 funder to 2 funders, grant income fell $22k → $12k.
3 of 7 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 95% 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 BARDET BIEDL SYNDROME 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
BARDET BIEDL SYNDROME FOUNDATION leans on a few funders — its largest provides 88% of grant income and the top three 98%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
99% 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 BARDET BIEDL SYNDROME FOUNDATION.
Largest funder’s share by year: 2018 100% · 2019 100% · 2020 49% · 2021 49% · 2022 74% · 2023 93% — 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.
Where its funders are
95% of BARDET BIEDL SYNDROME 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 $47k that is directly attributable, 100% of it comes from funders outside Pennsylvania, across 4 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $862k arriving through sponsors registered in 3 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
BARDET BIEDL SYNDROME FOUNDATION runs a healthier operating margin than three-quarters 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 BARDET BIEDL SYNDROME 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 Pennsylvania
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
65% of spending goes to programs.
Governance
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for BARDET BIEDL SYNDROME 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 BARDET BIEDL SYNDROME FOUNDATION?
- BARDET BIEDL SYNDROME FOUNDATION (Pennsylvania) receives grants from 7 organizations whose IRS filings report $909,143 to it, the largest being Silicon Valley Community Foundation ($800,000). 4 of them have funded it in more than one year, and 95% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does BARDET BIEDL SYNDROME FOUNDATION have?
- IRS filings report 7 organizations giving $909,143 in grants to BARDET BIEDL SYNDROME FOUNDATION, 4 of which have funded it in more than one year.
- Who is the largest funder of BARDET BIEDL SYNDROME FOUNDATION?
- Silicon Valley Community Foundation is the largest funder on record, with $800,000 in grants. The full list of funders is on this page.
- How can an organization like BARDET BIEDL SYNDROME FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Pennsylvania. 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 2021–2025), and the filings of 7 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