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← NATIONAL ORGANIZATION FOR RARE DISORDERS INC

Form 990 for tax year 2025

Filed by NATIONAL ORGANIZATION FOR RARE DISORDERS INC.

Totals

Total revenue
$34,577,196
Total expenses
$40,401,111
Contributions and grants received
$23,944,805
Grants paid
$22,081,890
Program service revenue
not reported
Investment income
not reported
Other revenue
not reported
Total assets, end of year
not reported
Total liabilities, end of year
not reported
Net assets or fund balances, end of year
not reported
Program services expenses (Part IX)
$32,777,209
Management and general expenses
$3,918,660
Fundraising expenses
$3,705,242
Program service expenses (Part III)
$32,777,209

Program services were 81.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Listed in Part VII

  • PAMELA GAVIN

    CEO

    Total calculated
    $512,049
    From this org
    $479,961
    From related orgs
    $0
    Other
    $32,088
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $457,461
    Bonus
    $22,500
    Other
    $0
    Deferred
    $17,500
    Nontaxable benefits
    $14,588
    Filer's total
    $512,049

  • KATHLEEN HOLCOMBE

    CHAIR

    Total calculated
    $0
    Hours/week
    10

  • DENNIS JACKMAN

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    5

  • MARK SKINNER

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • LORNA WEIR

    SECRETARY

    Total calculated
    $0
    Hours/week
    5

  • KIM ISENBERG

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • PAUL LYONS

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SUSAN BERRY MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SHAFALI JESTE MD

    DIRECTOR (UNTIL 12/2025)

    Total calculated
    $0
    Hours/week
    1

  • PHILIP PEARL MD

    DIRECTOR (UNTIL 12/2025)

    Total calculated
    $0
    Hours/week
    1

  • MIKE PORATH

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • TOM KELLY

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • STEVEN MAH PHD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • ALAN MILLER MD PHD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SHELDON SCHUSTER PHD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • JIM PALMA

    DIRECTOR (UNTIL 12/2025)

    Total calculated
    $0
    Hours/week
    1

  • PETER SALTONSTALL

    SENIOR ADVISOR & CEO EMERITUS

    Total calculated
    $49,661
    From this org
    $47,303
    From related orgs
    $0
    Other
    $2,358
    Hours/week
    17

  • NEETA KOTECHA

    VP & CFO

    Total calculated
    $224,762
    From this org
    $186,375
    From related orgs
    $0
    Other
    $38,387
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $186,375
    Bonus
    $0
    Other
    $0
    Deferred
    $9,647
    Nontaxable benefits
    $28,740
    Filer's total
    $224,762

  • KELLEEN ESPERIAS

    CHIEF STRATEGY & OPERATIONS OFFICER

    Total calculated
    $323,852
    From this org
    $294,239
    From related orgs
    $0
    Other
    $29,613
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $294,239
    Bonus
    $0
    Other
    $0
    Deferred
    $15,000
    Nontaxable benefits
    $14,613
    Filer's total
    $323,852

  • EDWARD NEILAN

    CHIEF MEDICAL & SCIENTIFIC OFFICER

    Total calculated
    $331,222
    From this org
    $270,662
    From related orgs
    $0
    Other
    $60,560
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $270,662
    Bonus
    $0
    Other
    $0
    Deferred
    $14,420
    Nontaxable benefits
    $46,140
    Filer's total
    $331,222

  • PRASHANT GOEL

    VP INFORMATION TECHNOLOGY

    Total calculated
    $308,624
    From this org
    $293,256
    From related orgs
    $0
    Other
    $15,368
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $293,256
    Bonus
    $0
    Other
    $0
    Deferred
    $14,696
    Nontaxable benefits
    $672
    Filer's total
    $308,624

  • TRACEY SIKORA

    VP OF RESEARCH & CLINICAL PROGRAMS

    Total calculated
    $218,821
    From this org
    $194,233
    From related orgs
    $0
    Other
    $24,588
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $194,233
    Bonus
    $0
    Other
    $0
    Deferred
    $10,000
    Nontaxable benefits
    $14,588
    Filer's total
    $218,821

  • ALEXANDRA MOORE

    VP OF DEVELOPMENT

    Total calculated
    $267,053
    From this org
    $254,340
    From related orgs
    $0
    Other
    $12,713
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $234,340
    Bonus
    $20,000
    Other
    $0
    Deferred
    $12,713
    Nontaxable benefits
    $0
    Filer's total
    $267,053

  • JILL POLLANDER

    VP PATIENT SERVICES

    Total calculated
    $211,944
    From this org
    $187,802
    From related orgs
    $0
    Other
    $24,142
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $187,802
    Bonus
    $0
    Other
    $0
    Deferred
    $9,554
    Nontaxable benefits
    $14,588
    Filer's total
    $211,944

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 · Written employment contract
  • 3 · Compensation survey or study
  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

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
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 7
THE BOARD OF DIRECTORS REVIEWS EXTERNAL SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR'S COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION.

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

Provenance

Return type
form_990
Tax year
2025
Filed
27 May 2026
IRS schema version
2025v4.1
Source object
202621489349300522

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