Connects and educates people affected by ectodermal dysplasias, supporting them and funding research.
For fiscal year 2025 it reported $1.6M in revenue, $1.6M in expenses, and $4.9M in net assets.Pt I
Where the money goes · FY2025
Total revenue
$1.6M
Pt VIII · Ln 12
Total expenses
$1.6M
Pt IX · Ln 25
Net assets
$4.9M
Pt X · Ln 32
Revenue less expenses (Pt I · Ln 19): $88K
Where spending went · Part IX cols B–D
85%
14%
Program services $0.85 Management & general $0.01 Fundraising $0.14
Program efficiency
85%
of spending reaches programs▼ -3% vs prior filing year
Operating runway
40.9mo
months of highly liquid reserves at operating expense rate▼ -18% vs prior filing year
Surplus margin
+5%
revenue over expenses, this year▲ +149% vs prior filing year
Summary of the Filing
Part I · fiscal year 2025 · Form 990
Revenue
$1.6M
FY2025▲ +34%
$2.0M$984K$0
FY2020FY2025
Expenses
$1.6M
FY2025▲ +30%
$1.6M$780K$0
FY2020FY2025
Total assets
$5.0M
FY2025▲ +4%
$5.0M$2.5M$0
FY2020FY2025
Total liabilities
$127K
FY2025▲ +29%
$191K$95K$0
FY2020FY2025
Total revenue
$1.6M
Pt VIII · Ln 12
Total expenses
$1.6M
Pt IX · Ln 25
Net assets
$4.9M
Pt X · Ln 32
Revenue less expensesPt I · Ln 19$88K
Total assetsPt X · Ln 16$5.0M
Program-expense ratioPt IX · col B85%
Voting members of governing bodyPt I · Ln 311
Independent voting membersPt I · Ln 411
Mission & Programs · Part III
Where the work happens
3 program services account for $1.3M of program spending, described in the organization's own filed words · FY2025.
01
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.
$627Kprogram expense
02
Research
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.
$399Kprogram expense
03
Treatment
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.
Mary Fete’s $118K as Executive Director
is at the 34th percentile of top reported officer pay among 731 $1–10M diseases & disorders nonprofits.
Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 2 named individuals · Part VII
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
Individual Mary Fete · Reported title EXECUTIVE DIRECTOR · Highest reported compensation $118K · Total expenses $1.6M
8%
Personnel share
Salaries, benefits & payroll (Pt IX 5-10) $894K · Total expenses $1.6M
57%
Peer comparison
Same NTEE category, revenue band, and state where available. Descriptive — not a grade.
Metric
This org
Peer median
Percentile
Program ratio
85%
—
—
Overhead ratio
1%
—
—
Fundraising cost ratio
20%
—
—
Revenue growth
34%
—
—
Straight from the Form 990 — descriptive, not an evaluation. A ratio is hidden when its base is zero or too small to be meaningful; the dollars are always shown.
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Sources
Every figure above is drawn from these filings
Form 990 e-file (XML) · FY2025IRS
Classification, formation year, addressIRS Business Master File
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