NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS

As filed

Subsection

03

NTEE code

G46Z

Classification

1000

Street

6 EXECUTIVE DR STE 2

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

• 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.

  Expenses $532,415 · Grants $10,400 · Revenue $10,275

• 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.

  Expenses $254,587 · Grants $3,925

• 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.

  Expenses $260,861

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $1,229,652

  Expenses

  $1,203,383

  Contributions

  $971,012

  Grants paid

  $14,325

• 2023

  Revenue

  $1,161,405

  Expenses

  $1,079,785

  Contributions

  $884,423

  Grants paid

  $45,033

• 2022

  Revenue

  $1,493,211

  Expenses

  $1,083,870

  Contributions

  $1,170,684

  Grants paid

  $25,103

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $1,968,542

  Expenses

  $885,354

  Assets (EOY)

  $4,339,643

• 2020 · 990

  Revenue

  $995,618

  Expenses

  $731,772

  Assets (EOY)

  $3,174,642

• 2019 · 990

  Revenue

  $1,078,711

  Expenses

  $849,033

  Assets (EOY)

  $2,717,658

• 2018 · 990

  Revenue

  $909,237

  Expenses

  $650,400

  Assets (EOY)

  $2,216,012

• 2017 · 990

  Revenue

  $871,710

  Expenses

  $855,693

  Assets (EOY)

  $2,330,765

• 2016 · 990

  Revenue

  $835,098

  Expenses

  $734,715

  Assets (EOY)

  $2,090,160

• 2015 · 990

  Revenue

  $996,187

  Expenses

  $805,005

  Assets (EOY)

  $1,919,131

• 2014 · 990

  Revenue

  $1,082,451

  Expenses

  $688,706

  Assets (EOY)

  $1,897,730

• 2013 · 990

  Revenue

  $678,375

  Expenses

  $760,390

  Assets (EOY)

  $1,519,010

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $1,049,405

  Assets (EOY)

  $1,505,095

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.

Grants received

• AMERICAN FOUNDATION OF UTAH INC

  $75,000

  2023 · GENERAL

• AMERICAN FOUNDATION OF UTAH INC

  $75,000

  2024 · GENERAL

• AMERICAN FOUNDATION OF UTAH INC

  $65,000

  2022 · GENERAL

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $43,700

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $34,880

  2023 · For grant recipient's exempt purposes

• THE NEW YORK COMMUNITY TRUST

  $25,000

  2023 · FOR GENERAL SUPPORT.

• AMERICAN ONLINE GIVING FOUNDATION INC

  $15,207

  2024 · GENERAL SUPPORT

• MCGOWAN FAMILY FOUNDATION INC

  $15,000

  2022 · Health - General Rehabilitative

• MCGOWAN FAMILY FOUNDATION INC

  $15,000

  2023 · Health - General Rehabilitative

• DONOR ADVISED CHARITABLE GIVING

  $14,250

  2024 · HEALTH

The 10 largest by cash amount. The API serves every itemized grant.

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