Illinois · Nonprofit
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS (Illinois) receives grants from 39 organizations whose IRS filings report $1,669,672 to it, the largest being AMERICAN FOUNDATION OF UTAH INC ($380,000). 26 of them have funded it in more than one year.
- Revenue FY2025
- $1.6M
- Funders on record
- 39
- Grants received
- $1.7M
- Net assets
- $4.9M
What National Foundation for Ectodermal Dysplasias does
Mission
To empower and connect people touched by ectodermal dysplasias through education, support, and research.
As stated on its FY2025 Form 990.
Programs
Support - nfed publishes high quality information to provide families with knowledge that will increase their quality of life. Information is shared through the first connect program, a web site, medical/dental guide series, and conferences. The national family conference is the nfed's hallmark program bringing entire families together to learn, share, and network with one another and with expert care providers. Affected children and their siblings attend kids camp at the conferences where they participate in educational and social activities with other children like them to develop self-esteem. The nfed provides financial assistance to individuals to attend the family conference. The nfed's family-to-family network connects families with a caring liaison in their region who can provide moral support, information and practical advice, guidance, and resources.
$626,577 spentof which $45,915 as grants$49,642 earned by the program48% of program spendingTreatment - nfed's patient care council, comprised of medical and dental experts, oversees the nfed's initiatives to improve treatment of ectodermal dysplasias. The nfed teaches care providers how to diagnose and treat the rare disorders through professional symposia and grand rounds at universities. The nfed advocates for improving access to care with sponsoring legislation to cover congenital anomalies, and collaborating with universities, government, patient health organizations. Affected individuals can receive more affordable care from experienced teams of dentists in treatment of ectodermal dysplasias at nfed dental treatment centers in the u.s. The nfed also helps families pay for needed care through the treatment assistance program and insurance coaching.
$293,085 spent22% of program spendingResearch - nfed's scientific advisory council oversees the nfed's research initiatives, aimed to improve the health and quality of life of affected individuals by finding management solutions and, eventually, finding cures for ectodermal dysplasias. The nfed advances research through advocacy and partnerships with organizations such as the national institute of health. The nfed provides seeds funds to researchers, provides them with access to affected individuals, and shares information to launch larger projects. Nfed is developing a web-based ectodermal dysplasias international registry to serve as a repository of genetic and clinical information and facilitates communication among scientists who strive to advance research on ectodermal dysplasias. The nfed also sponsors scientific meetings to increase understanding of the disorders.
$398,931 spent30% of program spending
The 3 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $1,318,593.
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 $3.2M to $4.3M (+37%).
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: 2021 9%. Grants only. Government contracts and fees sit inside program revenue.
68% of NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS’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. 0 of the last 9 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
Mary Fete
Executive director
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 8 funders to 22 funders, grant income rose $47k → $238k.
11 of 39 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 46% 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 NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS’s funders (the co-funder graph). Top 30 of 39 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
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS has a broad base — no single funder exceeds 23% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
68% 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 NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS.
Largest funder’s share by year: 2017 32% · 2018 59% · 2019 22% · 2020 47% · 2021 22% · 2022 38% · 2023 32% — 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.
How long its funders stay
61% of NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS's funders are still giving 3 years after their first grant; 67% 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
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS draws 100% of its grant income from funders outside Illinois, across 12 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $771k 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
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS holds deeper cash reserves than three-quarters of the 4,665 health nonprofits its size.
this organization peer median middle 50% of peers· 4,665 health nonprofits $1M–$10M, FY2025
Organizations like NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS
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 Illinois
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
85% of spending goes to programs.
Governance
Public support
93%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS: 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 NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS?
- NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS (Illinois) receives grants from 39 organizations whose IRS filings report $1,669,672 to it, the largest being AMERICAN FOUNDATION OF UTAH INC ($380,000). 26 of them have funded it in more than one year.
- How many funders does NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS have?
- IRS filings report 39 organizations giving $1,669,672 in grants to NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS, 26 of which have funded it in more than one year.
- Who is the largest funder of NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS?
- AMERICAN FOUNDATION OF UTAH INC is the largest funder on record, with $380,000 in grants. The full list of funders is on this page.
- How can an organization like NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Illinois. 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 39 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