← UNDIAGNOSED DISEASES NETWORK FOUNDATION

Form 990 for tax year 2024

Filed by UNDIAGNOSED DISEASES NETWORK FOUNDATION.

Totals

Total revenue: $328,998
Total expenses: $1,427,906
Contributions and grants received: $324,360
Grants paid: $2,500
Program service revenue: $0
Investment income: $4,638
Other revenue: $0
Total assets, end of year: $1,444,511
Total liabilities, end of year: $47,368
Net assets or fund balances, end of year: $1,397,143
Program services expenses (Part IX): $1,399,761
Management and general expenses: $20,267
Fundraising expenses: $7,878
Program service expenses (Part III): $1,399,761

Program services were 98.0% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

1a · Federated campaigns

$0
1b · Membership dues

$0
1c · Fundraising events

$0
1d · Related organizations

$0
1e · Government grants (contributions)

$0
1f · All other contributions, gifts and grants

$324,360
1g · Noncash contributions included above

$0
3 · Investment income

total $4,638 · related or exempt $0 · unrelated business $0 · excluded $4,638
4 · Income from investment of tax-exempt bond proceeds

total $0 · related or exempt $0 · unrelated business $0 · excluded $0
5 · Royalties

total $0 · related or exempt $0 · unrelated business $0 · excluded $0
6c · Rental income or loss

real property $0 · personal property $0
7c · Gain or loss

securities $0 · other assets $0
8a · Fundraising events: contributions included on line 1c

$0
11e · Other revenue, total

$0

Functional expenses

Part IX, the statement of functional expenses.

2 · Grants to domestic individuals

total $2,500 · program services $2,500
5 · Compensation of officers, directors and key employees

total $354,309 · program services $353,336 · management and general $560 · fundraising $413
11c · Fees: accounting

total $15,420 · management and general $15,420
11g · Fees: other

total $950,270 · program services $946,946 · management and general $2,362 · fundraising $962
12 · Advertising and promotion

total $3,590 · program services $3,590
13 · Office expenses

total $14,334 · program services $7,765 · management and general $774 · fundraising $5,795
14 · Information technology

total $5,056 · program services $5,056
17 · Travel

total $17,276 · program services $16,568 · fundraising $708
19 · Conferences, conventions and meetings

total $32,341 · program services $32,341
22 · Depreciation, depletion and amortization

total $856 · management and general $856
24a · Other expenses: PROGRAM EXPENSES

total $22,601 · program services $22,601 · management and general $0 · fundraising $0
24b · Other expenses: SUBSCRIPTIONS

total $8,058 · program services $8,058 · management and general $0 · fundraising $0
24e · All other expenses

total $1,295 · program services $1,000 · management and general $295

Balance sheet

Part X, book values.

1 · Cash, non-interest-bearing

beginning of year $381,066 · end of year $207,804
2 · Savings and temporary cash investments

beginning of year $2,007,663 · end of year $1,234,521
3 · Pledges and grants receivable

beginning of year $15,000
4 · Accounts receivable

beginning of year $0
5 · Loans and receivables from officers and key people

beginning of year $0
6 · Loans and receivables from disqualified persons

beginning of year $0
7 · Other notes and loans receivable

beginning of year $0
8 · Inventories for sale or use

beginning of year $0
9 · Prepaid expenses and deferred charges

beginning of year $0
10a · Land, buildings and equipment: cost or other basis

$3,099
10b · Land, buildings and equipment: accumulated depreciation

$913
10c · Land, buildings and equipment, net

beginning of year $2,608 · end of year $2,186
11 · Investments: publicly traded securities

beginning of year $0
12 · Investments: other securities

beginning of year $0
13 · Investments: program-related

beginning of year $0
14 · Intangible assets

beginning of year $0
15 · Other assets

beginning of year $0
17 · Accounts payable and accrued expenses

beginning of year $35,236 · end of year $47,368
18 · Grants payable

beginning of year $0
19 · Deferred revenue

beginning of year $0
20 · Tax-exempt bond liabilities

beginning of year $0
21 · Escrow or custodial account liability

beginning of year $0
23 · Secured mortgages and notes payable

beginning of year $0
24 · Unsecured notes and loans payable

beginning of year $0
27 · Net assets without donor restrictions

beginning of year $2,371,101 · end of year $1,397,143
28 · Net assets with donor restrictions

beginning of year $0 · end of year $0

Mission and programs · 2024

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.

PATIENT NAVIGATION PROGRAM - THE PATIENT NAVIGATION PROGRAM SUPPORTS PATIENTS AND FAMILIES WITH UNDIAGNOSED AND ULTRA-RARE DISEASE CONDITIONS. ONCE ENROLLED, PATIENTS AND FAMILIES ARE ASSIGNED A PATIENT NAVIGATOR THAT WILL WORK WITH THEM ONE-ON-ONE TO ADDRESS THEIR NEEDS AND HELP THEM NAVIGATE THE DIAGNOSTIC AND THERAPEUTIC ODYESSEYS.

Expenses $941,747 · Grants $2,500
GENERAL 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.

Expenses $438,676
OUTREACH 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.

Expenses $16,000
OTHER PROGRAMS - COLUMBUS FOUNDATION GRANT

Expenses $3,338

As filed on the 2024 return.

Listed in Part VII

Amy GrayAMY GRAY

CEO

Total calculated

$352,756

From this org

$352,756

From related orgs

$0

Other

$0

Hours/week

40

Schedule J breakdown matched by us

Base

$352,756

Bonus

$0

Other

$0

Deferred

$0

Nontaxable benefits

$0

Filer's total

$352,756
Stephanie TomlinsonSTEPHANIE TOMLINSON

BOARD MEMBER

Total calculated

$1,554

From this org

$1,554

From related orgs

$0

Other

$0

Hours/week

2
Meghan HalleyMEGHAN HALLEY

BOARD CHAIRMAN

Total calculated

$0

Hours/week

10
F Sessions ColeF SESSIONS COLE

SECRETARY

Total calculated

$0

Hours/week

10
Troy EvansTROY EVANS

TREASURER

Total calculated

$0

Hours/week

10
Anne PariserANNE PARISER

BOARD MEMBER

Total calculated

$0

Hours/week

2
Effie ParksEFFIE PARKS

BOARD MEMBER

Total calculated

$0

Hours/week

2
Gerald SweeneyGERALD SWEENEY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Liliana FernandezLILIANA FERNANDEZ

BOARD MEMBER

Total calculated

$0

Hours/week

2
Parvathy KrishnanPARVATHY KRISHNAN

BOARD MEMBER

Total calculated

$0

Hours/week

2
Sika DunyohSIKA DUNYOH

BOARD MEMBER

Total calculated

$0

Hours/week

2
Stephan ZuchnerSTEPHAN ZUCHNER

BOARD MEMBER

Total calculated

$0

Hours/week

2
Tom KelleyTOM KELLEY

BOARD MEMBER

Total calculated

$0

Hours/week

2
Tania SimoncelliTANIA SIMONCELLI

BOARD MEMBER

Total calculated

$0

Hours/week

2
Jessica SwansonJESSICA SWANSON

BORAD MEMBER

Total calculated

$0

Hours/week

2
Kelly CerventesKELLY CERVENTES

BOARD MEMBER

Total calculated

$0

Hours/week

2

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. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

3 · Independent compensation consultant
3 · Form 990 of other organizations
3 · Approval by the board or compensation committee

Answered no

4a · Severance or change-of-control payment
4b · Supplemental nonqualified retirement plan
4c · Equity-based compensation arrangement
5a · Pay contingent on this organization's revenues
5b · Pay contingent on a related organization's revenues
6a · Pay contingent on this organization's net earnings
6b · Pay contingent on a related organization's net earnings
7 · Other non-fixed payments
8 · Paid under the initial-contract exception

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

No itemized grants to organizations on this return.

Provenance

Return type: form_990
Tax year: 2024
Filed: 21 October 2025
IRS schema version: 2024v5.0
Source object: 202512959349301431

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.