NATIONAL ORGANIZATION FOR RARE DISORDERS INC

EIN: 133223946 501(c)(3)

QUINCY, MA

Total Revenue
$50,676,798
Total Expenses
$43,034,462
Total Assets
$72,321,740
Net Assets
$68,575,937
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1983
Legal Domicile
NY
Principal Officer
NEETA KOTECHA
Phone
6172497300
Tax Period
2024-01-01 to 2024-12-31

NATIONAL ORGANIZATION FOR RARE DISORDERS INC, founded in 1983, is a mid-sized nonprofit that reported $50.7M in total revenue in fiscal year 2024. Revenue fell 24% from the prior year — a significant decline worth monitoring. The organization ran a surplus of $7.6M, a strong 15% operating margin.

Mission

NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $40,390,497
Program Service Revenue $7,674,762
Investment Income $2,611,539
Other Revenue $0
TOTAL REVENUE $50,676,798

Expense Breakdown

Grants Paid $23,396,846
Salaries & Benefits $12,577,235
Fundraising Expenses $3,164,405
Program Expenses $35,833,201
Other Expenses $7,060,381
TOTAL EXPENSES $43,034,462

Year-over-Year Comparison

2024 2023 Change
Revenue $50,676,798 $66,397,453 -0.2%
Expenses $43,034,462 $52,832,739 -0.2%
Net Income $7,642,336 $13,564,714 -0.4%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Financial Distress Indicator

Liquidity & Cash Position

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Governance

Voting Members
12
Independent Members
11
Employees
124
Volunteers
1181

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
8
$1,173,849
Total Directors
13
$398,956
Key Employees
0
$0
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
PETER SALTONSTALL CEO (UNTIL 5/24)/CEO EMERITUS (AS OF 5/24) 35.00
Officer Director
$374,441 $24,515 $398,956
KATHLEEN HOLCOMBE CHAIR 10.00
Officer Director
$0 $0 $0
SHELDON SCHUSTER PHD VICE CHAIR 5.00
Officer Director
$0 $0 $0
LEON EIDELMAN TREASURER (UNTIL 12/24) 5.00
Officer Director
$0 $0 $0
JIM PALMA SECRETARY 5.00
Officer Director
$0 $0 $0
DENNIS JACKMAN DIRECTOR 1.00
Director
$0 $0 $0
MARK SKINNER DIRECTOR 1.00
Director
$0 $0 $0
SUSAN BERRY MD DIRECTOR 1.00
Director
$0 $0 $0
SHAFALI JESTE MD DIRECTOR 1.00
Director
$0 $0 $0
PHILLIP PEARL MD DIRECTOR 1.00
Director
$0 $0 $0
MIKE PORATH DIRECTOR 1.00
Director
$0 $0 $0
TOM KELLY DIRECTOR 1.00
Director
$0 $0 $0
LORNA WEIR DIRECTOR 1.00
Director
$0 $0 $0
PAMELA GAVIN EVP (UNTIL 5/24)/CEO (AS OF 5/24) 35.00
Officer
$441,759 $33,733 $475,492
NEETA KOTECHA VP & CFO 35.00
Officer
$179,637 $42,329 $221,966
KELLEEN ESPERIAS CHIEF STRATEGY & OPERATIONS OFFICER 35.00
Officer
$71,108 $6,327 $77,435
EDWARD NEILAN CHIEF MEDICAL & SCIENTIFIC OFFICER 35.00
Highest
$270,662 $61,615 $332,277
PRASHANT GOEL VP INFORMATION TECHNOLOGY 35.00
Highest
$283,442 $14,622 $298,064
PATRICK COLLINS VP COMMUNITY & CORPORATE AFFAIRS 35.00
Highest
$207,141 $58,445 $265,586
ALEXANDRA MOORE VP OF DEVELOPMENT 35.00
Highest
$245,775 $12,284 $258,059
JILL POLLANDER VP PATIENT SERVICES 35.00
Highest
$182,382 $25,766 $208,148
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 $50,676,798 $43,034,462 $72,321,740 $7,642,336
2023 $66,397,453 $52,832,739 $65,154,464 $13,564,714
2022 $59,872,383 $48,420,739 $49,542,120 $11,451,644
2021 $43,188,172 $57,720,517 $37,875,246 $-14,532,345
2020 $42,843,360 $52,712,119 $52,774,540 $-9,868,759
2019 $52,413,377 $41,789,694 $61,751,096 $10,623,683
2018 $47,123,099 $34,074,818 $50,838,028 $13,048,281
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