National Foundation for Ectodermal Dysplasias

Nonprofit profile at a glance

EIN
371112496
IRS 990 coverage
2011–2025
Forms available
Form 990 2025
Location
Fairview Heights, IL, USA
Phone
6185662020
Rating
90
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$1,647,124
Expenses
$1,559,531
Assets
$4,979,793
Liabilities
$126,727

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

12 people listed

Executive titles in this filing

  • KARL NELSEN (PRESIDENT)
  • ANIL VORA (VICE PRESIDENT)
  • MARY FETE (EXECUTIVE DIRECTOR)

Highest reported compensation

  • MARY FETE (EXECUTIVE DIRECTOR): $118,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To empower and connect people touched by ectodermal dysplasias through education, support, and research.

What it reported doing in 2025

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.

Operating model

Revenue model
Donor-supported. 88% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 97% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 86
  • Transparency & Controls: 94
  • Accountability: 100
  • Sustainability: 55
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 84.6%; rating input score 85
  • Fundraising efficiency: $5.1 raised per $1 spent on fundraising; rating input score 16; 16th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 78th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 8 of 8 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 5.3%; rating input score 46; 46th percentile among comparable filings
  • Total-asset coverage ratio: 3.19; rating input score 76; 76th percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 51; 51st percentile among comparable filings
  • Officer compensation ratio: 7.6%; rating input score 44; 44th percentile among comparable filings

Growth

  • Program expense growth: 5.7% per year; rating input score 100; 40th percentile among comparable filings
  • Revenue growth: 4.1% per year; rating input score 100; 32nd percentile among comparable filings
  • Asset growth: 9.7% per year; rating input score 100; 54th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 84.6% of spending went to programs
  • Governance: 11 of 11 board members independent · 8 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $1.3M in reported program spending
  • Leadership: top reported pay $118K · 12 people listed
  • Consistency: 33 of 33 current checks pass
  • Schedules: 7 filed schedules · includes major donors and grants
  • Filing history: 15 filing years from 2011 to 2025
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 16/100.
  • Moderate — Sustainability: Operating margin scored 46/100.
  • Moderate — Sustainability: Officer compensation ratio scored 44/100.
  • Review — Sustainability: Liabilities to assets ratio scored 51/100.