California · Nonprofit
FORGOTTEN DISEASES RESEARCH FOUNDATION
FORGOTTEN DISEASES RESEARCH FOUNDATION (California) receives grants from 3 organizations whose IRS filings report $434,306 to it, the largest being JOHNS HOPKINS UNIVERSITY ($257,696). 3 of them have funded it in more than one year.
- Revenue FY2025
- $137k
- Funders on record
- 3
- Grants received
- $434k
- Net assets
- $157k
What Forgotten Diseases Research Foundation does
Mission
Forgotton diseases research foundation is a nonprofit dedicated to very rare disorders. The goals are to improve the quality of life of patients with these disorders and to improve research practices in the following ways: -creating a single place for disseminating information about very rare diseases. -helping people diagnose very rare diseases. -discovering the most robust scientific approaches to studying rare diseases. -disseminating information to families that will help them care for sick family members. -educating the public about what can be learned from the study of rare diseases. -making physicians more knowledgeable about these diseases.
As stated on its FY2025 Form 990-EZ.
Program
Created website which is large repository of growth information for children around the world including 35 countries. Submitted large study for publication. The study compares growth in children around the world with the world health organization's international growth curves.
$98,520 spent100% of program spending
The program described on its FY2025 Form 990-EZ. Program spending in total: $98,520.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 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 $120k to $157k (+30%).
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.
99% of FORGOTTEN DISEASES RESEARCH 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. 2 of the last 6 reported years ran a deficit.
Who funds it, year by year
2017 → 2023: the base held at 1 funder, grant income rose $30k → $35k.
From the IRS filings of FORGOTTEN DISEASES RESEARCH 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
FORGOTTEN DISEASES RESEARCH FOUNDATION leans on a few funders — its largest provides 59% of grant income and the top three 100%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
76% 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 FORGOTTEN DISEASES RESEARCH FOUNDATION.
Largest funder’s share by year: 2017 100% · 2018 100% · 2019 100% · 2021 53% · 2022 65% · 2023 100% — broadly stable.
“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
FORGOTTEN DISEASES RESEARCH FOUNDATION draws 100% of its grant income from funders outside California, across 3 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. 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
FORGOTTEN DISEASES RESEARCH 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 FORGOTTEN DISEASES RESEARCH 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 California
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
95%
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 FORGOTTEN DISEASES RESEARCH 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 FORGOTTEN DISEASES RESEARCH FOUNDATION?
- FORGOTTEN DISEASES RESEARCH FOUNDATION (California) receives grants from 3 organizations whose IRS filings report $434,306 to it, the largest being JOHNS HOPKINS UNIVERSITY ($257,696). 3 of them have funded it in more than one year.
- How many funders does FORGOTTEN DISEASES RESEARCH FOUNDATION have?
- IRS filings report 3 organizations giving $434,306 in grants to FORGOTTEN DISEASES RESEARCH FOUNDATION, 3 of which have funded it in more than one year.
- Who is the largest funder of FORGOTTEN DISEASES RESEARCH FOUNDATION?
- JOHNS HOPKINS UNIVERSITY is the largest funder on record, with $257,696 in grants. The full list of funders is on this page.
- How can an organization like FORGOTTEN DISEASES RESEARCH FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in California. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Forgotten Diseases Research →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2020–2025), and the filings of 3 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