Kentucky · Nonprofit
Progressive Familial Intrahepatic Cholestasis
Progressive Familial Intrahepatic Cholestasis (Kentucky) receives grants from 6 organizations whose IRS filings report $952,144 to it, the largest being Silicon Valley Community Foundation ($600,000). 3 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $697k
- Funders on record
- 6
- Grants received
- $952k
- Net assets
- $349k
What Progressive Familial Intrahepatic Cholestasis does
Mission
To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC.
As stated on its FY2025 Form 990.
Program
In 2025 PFIC Network provided program services in the areas of peer support, education, outreach, advocacy and research to further our mission of improving the lives of patients and families affected by PFIC worldwide. We continued to offer care packages, conference travel scholarships and direct financial assistance to patients and families in more than 10 countries. In June, we completed IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information), a two-year project which produced a research roadmap of patient-identified priorities and helped us build an educated and motivated body of patients and families interested in pursuing further involvement in research. This project was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Additionally, we were awarded a second PCORI Engagement Award (EACB-42398) to build on the work started in IMPACT by establishing a patient-centered research consortium. In July, we co-hosted the first-ever Cholestatic Liver Disease Summit alongside two other cholestatic liver disease organizations, Biliary Atrestia Research and Education and Alagille Syndrome…
$384,544 spentof which $96,512 as grants100% of program spending
The program described on its FY2025 Form 990. Program spending in total: $384,544.
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 $99k to $718k (+625%).
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.
102% of Progressive Familial Intrahepatic Cholestasis’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. 3 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
Emily Ventura
Co-Founder Executive Director
As listed on its FY2025 Form 990.
Who funds it, year by year
2019 → 2023: the base held at 2 funders, grant income rose $35k → $56k.
5 of 6 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 97% 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 Progressive Familial Intrahepatic Cholestasis’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
Progressive Familial Intrahepatic Cholestasis leans on a few funders — its largest provides 63% of grant income and the top three 96%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
100% 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 Progressive Familial Intrahepatic Cholestasis.
Largest funder’s share by year: 2019 71% · 2020 93% · 2021 95% · 2022 71% · 2023 90% — 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.
Where its funders are
97% of Progressive Familial Intrahepatic Cholestasis'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 $25k that is directly attributable, 100% of it comes from funders outside Kentucky, across 1 state.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $927k arriving through sponsors registered in 5 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
Progressive Familial Intrahepatic Cholestasis has grown faster 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 Progressive Familial Intrahepatic Cholestasis
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 Kentucky
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
73% of spending goes to programs.
Governance
Public support
69%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 22 states
Screen this organization
A dated, signed PDF of the compliance screen for Progressive Familial Intrahepatic Cholestasis: 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 Progressive Familial Intrahepatic Cholestasis?
- Progressive Familial Intrahepatic Cholestasis (Kentucky) receives grants from 6 organizations whose IRS filings report $952,144 to it, the largest being Silicon Valley Community Foundation ($600,000). 3 of them have funded it in more than one year, and 97% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does Progressive Familial Intrahepatic Cholestasis have?
- IRS filings report 6 organizations giving $952,144 in grants to Progressive Familial Intrahepatic Cholestasis, 3 of which have funded it in more than one year.
- Who is the largest funder of Progressive Familial Intrahepatic Cholestasis?
- Silicon Valley Community Foundation is the largest funder on record, with $600,000 in grants. The full list of funders is on this page.
- How can an organization like Progressive Familial Intrahepatic Cholestasis find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Kentucky. 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 6 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