Civic Intelligence

Undiagnosed Diseases Network Foundation

EIN 87-3474254 • 501(c)3 • Washington, DC

Profile

The udnf's mission is to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions. We aim to foster collaboration between patients, clinicians, and scientists to enhance the quality of life of undiagnosed patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed and ultra-rare diseases.

1012 14th Street NW Suite 500Washington, DC 20005

udnf.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

42nd percentile

0.03x

Higher debt load relative to assets than 42% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

60th percentile

0.14x

Higher debt load relative to revenue than 60% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

1st percentile

-334%

Higher net margin than 1% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

4th percentile

-40%

Faster asset growth than 4% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

1st percentile

-87%

Faster revenue growth than 1% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets42nd percentile

Assets

Down

$1,444,511

Down $961,826 (-40%) from 2023

Liabilities

Up

$47,368

Up $12,132 (+34%) from 2023

Net Assets

Down

$1,397,143

Down $973,958 (-41%) from 2023

Operations
Liabilities / Revenue60th percentileNet Margin1st percentile

Revenue

Down

$328,998

Down $2,250,827 (-87%) from 2023

Expenses

Up

$1,427,906

Up $1,209,569 (+554%) from 2023

Net Income

Down

-$1,098,908

Down $3,460,396 (-147%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth4th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$3.0M$2.0M$1.0M$0Assets 2021: $0Liabilities 2021: $0Net Assets 2021: $02021Assets 2023: $2,406,337Liabilities 2023: $35,236Net Assets 2023: $2,371,1012023Assets 2024: $1,444,511Liabilities 2024: $47,368Net Assets 2024: $1,397,1432024

Highlighted filing

2024

Assets$1,444,511
Liabilities$47,368
Net Assets$1,397,143
Open 2024 Filing

Operations Trend

Revenue Growth1st percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$3.0M$2.0M$1.0M$0-$1.0M-$2.0MRevenue 2021: $0Expenses 2021: $0Net Income 2021: $02021Revenue 2023: $2,579,825Expenses 2023: $218,337Net Income 2023: $2,361,4882023Revenue 2024: $328,998Expenses 2024: $1,427,906Net Income 2024: -$1,098,9082024

Highlighted filing

2024

Revenue$328,998
Expenses$1,427,906
Net Income-$1,098,908
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,444,511
Liabilities
$47,368
Net assets
$1,397,143
Revenue
$328,998
Expenses
$1,427,906
Net income
-$1,098,908
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$1.44$0.05$1.40$0.33$1.43$1.10
2023Detailed filing. Detailed filing data is available for this year.$2.41$0.04$2.37$2.58$0.22$2.36
2021Detailed filing. Detailed filing data is available for this year.$0.00$0.00$0.00$0.00$0.00$0.00
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Oct 21, 2025
Return Version
2024v5.0
Gross Receipts
$328,998
Mission and Program Overview

Mission

The UDNF's mission is to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions.We aim to foster collaboration between patients, clinicians, and scientists to enhance the quality of life of undiagnosed patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed and ultra-rare diseases.

The udnf's mission is to improve access to diagnosis, research, and care for all with undiagnosed and ultra-rare conditions. We aim to foster collaboration between patients, clinicians, and scientists to enhance the quality of life of undiagnosed patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed and ultra-rare diseases.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$2,007,663$1,234,521▼ $773,142
Cash and Non-Interest-Bearing Accounts$381,066$207,804▼ $173,262
Pledges and Grants Receivable$15,000--
Land, Buildings, and Equipment, Net$2,608$2,186▼ $422
Accounts Receivable$0--
Other Notes and Loans Receivable, Net$0--
Receivable From Disqualified Prsn$0--
Receivables From Officers Etc$0--
Investments Other Securities$0--
Investments Program Related$0--
Investments in Publicly Traded Securities$0--
Intangible Assets$0--
Inventories for Sale or Use$0--
Prepaid Expenses and Deferred Charges$0--
Total Assets$2,406,337$1,444,511▼ $961,826
Other Assets Total$0--
Liabilities
Accounts Payable and Accrued Expenses$35,236$47,368▲ $12,132
Grants Payable$0--
Mortgage Notes Payable Secured by Investment Property$0--
Unsecured Notes Loans Payable$0--
Deferred Revenue$0--
Escrow Account Liability$0--
Tax Exempt Bond Liabilities$0--
Total Liabilities$35,236$47,368▲ $12,132
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$2,371,101$1,397,143▼ $973,958
Net Assets With Donor Restrictions$0$0→ $0
Total Net Assets Fund Balance$2,371,101$1,397,143▼ $973,958
Total Liabilities and Net Assets / Fund Balance$2,406,337$1,444,511▼ $961,826

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$2,186$913$3,099
Buildings$0$0$0
Other Land Buildings$0$0$0
Land$0-$0
Leasehold Improvements$0$0$0
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseTotal
Amy GrayCEOFT$352,756$352,756
Stephanie TomlinsonBoard Member-$1,554$1,554

Board Members and Trustees

NameTitle
Meghan HalleyBoard Chairman
Anne PariserBoard Member
Effie ParksBoard Member
Gerald SweeneyBoard Member
Kelly CerventesBoard Member
Liliana FernandezBoard Member
Parvathy KrishnanBoard Member
Sika DunyohBoard Member
Stephan ZuchnerBoard Member
Tania SimoncelliBoard Member
Tom KelleyBoard Member
Jessica SwansonBorad Member
F Sessions ColeSecretary
Troy EvansTreasurer

Highest Paid Contractors

ContractorServicesLocationCompensation
Finn Partners INCStrategic Leadership76 PACER CIRCLE, Wellington, FL 33414$352,756
Michelle HerndonPatient Navigation6932 RAVENSCROFT DR, St Louis, MO 63123$163,053
Christian Bailey SiscoePatient Navigation46 GLADNEY LOOP, Rayville, LA 71269$108,161
-Communications Support1675 BROADWAY, New York, NY 10019$100,755
Revenue and Support

Revenue Composition

Contributions and Grants
$324,360
Program Service Revenue
$0
Investment Income
$4,638
Other Revenue
$0
All Other Contributions
$324,360
Change in Net Assets
$-1,098,908
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$1,071,097
Salaries, Compensation, and Employee Benefits$354,309
Total Fundraising Expense$7,878
Grants and Similar Amounts Paid$2,500
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Fees for Services Other$946,946$2,362$962$950,270
Current Officers, Directors, Trustees, and Key Employees$353,336$560$413$354,309
Conferences and Meetings$32,341--$32,341
Travel$16,568-$708$17,276
Fees for Services Accounting-$15,420-$15,420
Office Expenses$7,765$774$5,795$14,334
Other Expenses$8,058$0$0$8,058
Information Technology$5,056--$5,056
Advertising$3,590--$3,590
Grants to Domestic Individuals$2,500--$2,500
All Other Expenses$1,000$295-$1,295
Depreciation Depletion-$856-$856
Total Functional Expenses$1,399,761$20,267$7,878$1,427,906
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
Yes
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons$0--
Receivables from Officers, Directors, Trustees, and Key Employees$0--
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“The form 990 is presented and shared at the board meeting.”

Form 990, Part VI, Section B, Line 12C

“The conflict of interest policy is reviewed annually with the board during meeting and during board orientation with the new members.”

Form 990, Part VI, Section B, Line 15

“Compensation benchmark reports such as guidestars annual compensation benchmark report was utilized to establish compensation.”

Form 990, Part VI, Section C, Line 19

“The organization's documents are available to the public upon request. The form 990s can be found on websites - irs.gov and guidestar.org.”

Filing and Contact Details

Filer

Filer Name
Undiagnosed Diseases Network Foundation
EIN
87-3474254
Phone
2025994465
Address
1012 14TH STREET NW SUITE 500, WASHINGTON, DC 20005

Signing Officer

Name
Troy Evans
Title
Treasurer
Phone
8017922697
Signed
2025-10-21
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Danielle Carnival
Formed
2021
Legal Domicile
Dc
Voting Board Members
15
Independent Board Members
14
Employees
0
Volunteers
25

Preparer

Firm
Easy Office Dba Jitasa
Address
1120 S RACKHAM WAY SUITE 300, MERIDIAN, ID 83642
Preparer
Jermey Cork
Phone
2082874777
Supplemental Narrative

Additional Explanations

Form 990, Part IX, Line 11G

“Other fees includes contract services such as it consultant and marketing consultant.”

Raw XML AppendixShowing 400 of 581 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/ContriRptFundraisingEventAmt00
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IRS990/Form990PartVIISectionAGrp/TitleTxt10BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt11BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt12BOARD MEMBER
IRS990/Form990PartVIISectionAGrp/TitleTxt13BOARD MEMBER
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IRS990/MissionDesc0THE UDNF'S MISSION IS TO IMPROVE ACCESS TO DIAGNOSIS, RESEARCH, AND CARE FOR ALL WITH UNDIAGNOSED AND ULTRA-RARE CONDITIONS. WE AIM TO FOSTER COLLABORATION BETWEEN PATIENTS, CLINICIANS, AND SCIENTISTS TO ENHANCE THE QUALITY OF LIFE OF UNDIAGNOSED PATIENTS. WE DO THIS BY MITIGATING BARRIERS TO EQUITY AND ACCESS IN HEALTHCARE; SETTING STANDARDS FOR PATIENT MANAGEMENT; AND BRIDGING DIAGNOSIS AND THERAPEUTICS AS WELL AS RESEARCH AND CLINICAL CARE IN UNDIAGNOSED AND ULTRA-RARE DISEASES.
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IRS990/ProgSrvcAccomActy2Grp/Desc0GENERAL PROGRAMS - CONTINUING, STRENGTHENING, AND EXPANDING THE UNDIAGNOSED DISEASES NETWORK, A RESEARCH INSTITUTE BACKED BY THE NATIONAL INSTITUTE OF HEALTH THAT SEEKS TO PROVIDE ANSWERS FOR PATIENTS AND FAMILIES AFFECTED BY UNDIAGNOSED DISEASES.
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IRS990/ProgSrvcAccomActy3Grp/Desc0OUTREACH AND EDUCATION - UNDIAGNOSED AND ULTRA-RARE PATIENTS CAN CALL THE UDNF TO ACCESS INFORMATION ABOUT RESEARCH OPPORTUNITIES, DIAGNOSTIC RESOURCES, THERAPEUTIC MATCHING, TECHNOLOGICAL DEVELOPMENTS, SOCIAL SERVICES, AND ADVOCACY RESOURCES. WE NETWORK WITH PATIENT ADVOCACY ORGANIZATIONS, COMMUNITY HEALTH PROVIDERS, RESEARCHERS, SOCIAL SERVICE PROVIDERS, AND FUNDERS.
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