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National Foundation for Ectodermal Dysplasias

EIN 37-1112496 · Fairview Hts, IL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceStrong100 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO EMPOWER AND CONNECT PEOPLE TOUCHED BY ECTODERMAL DYSPLASIAS THROUGH EDUCATION, SUPPORT, AND RESEARCH.

Income
$1.6 million
Spending
$1.6 million
Spent on programs
85%
Reserves
37.3 months of spending
Largest source of income
donations and private grants, 68%
Employees
10
Volunteers
443
Highest pay
$118,000, executive director

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 83% of charities in its peer group (diseases, $1m to $10m).

  • Reserves

    35 of 35

    Spendable reserves would cover 37.3 months of spending.

  • Debt

    20 of 20

    It owes 3% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 5% of income.

  • Income trend

    15 of 15

    Income rose 34% on the year before.

  • Spending floor

    15 of 15

    85% of spending went to programs and raising each dollar of donations cost 20 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 100 out of 100. Higher than 61% of charities in its peer group (diseases, $1m to $10m).

  • Independent board

    25 of 25

    11 of 11 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $626,577 spent. 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.
  2. $293,085 spent. 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. 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.
  3. $398,931 spent. 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. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since June 1983.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.