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Nonprofiteer
← NATIONAL ORGANIZATION FOR RARE DISORDERS INC

Form 990 for tax year 2023

Filed by NATIONAL ORGANIZATION FOR RARE DISORDERS INC.

Totals

Total revenue
$66,397,453
Total expenses
$52,832,739
Contributions and grants received
$55,591,572
Grants paid
$35,012,233
Program services expenses (Part IX)
$46,561,492
Management and general expenses
$3,566,387
Fundraising expenses
$2,704,860
Program service expenses (Part III)
$46,561,492

Program services were 88.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Listed in Part VII

  • PETER SALTONSTALL

    PRESIDENT/CEO

    Total calculated
    $523,208
    From this org
    $496,804
    From related orgs
    $0
    Other
    $26,404
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $481,804
    Bonus
    $15,000
    Other
    $0
    Deferred
    $16,500
    Nontaxable benefits
    $9,904
    Filer's total
    $523,208

  • KATHLEEN HOLCOMBE

    CHAIR

    Total calculated
    $0
    Hours/week
    10

  • DENNIS JACKMAN

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    1

  • LEON EIDELMAN

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • JIM PALMA

    SECRETARY

    Total calculated
    $0
    Hours/week
    1

  • MARK SKINNER

    DIRECTOR

    Total calculated
    $0
    Hours/week
    5

  • SUSAN BERRY MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • SHAFALI JESTE MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • PHILLIP PEARL MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • MIKE PORATH

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • TOM KELLY

    DIRECTOR (AS OF 5/4/23)

    Total calculated
    $0
    Hours/week
    1

  • SHELDON SCHUSTER PHD

    DIRECTOR (AS OF 5/4/23)

    Total calculated
    $0
    Hours/week
    1

  • LORNA WEIR

    DIRECTOR (AS OF 5/4/23)

    Total calculated
    $0
    Hours/week
    1

  • STEVEN GROSSMAN

    DIRECTOR (UNTIL 1/31/23)

    Total calculated
    $0
    Hours/week
    1

  • PAMELA GAVIN

    EXECUTIVE VICE PRESIDENT

    Total calculated
    $422,733
    From this org
    $390,823
    From related orgs
    $0
    Other
    $31,910
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $365,823
    Bonus
    $25,000
    Other
    $0
    Deferred
    $16,500
    Nontaxable benefits
    $15,410
    Filer's total
    $422,733

  • NEETA KOTECHA

    VP FINANCE

    Total calculated
    $215,677
    From this org
    $177,102
    From related orgs
    $0
    Other
    $38,575
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $174,602
    Bonus
    $2,500
    Other
    $0
    Deferred
    $9,137
    Nontaxable benefits
    $29,438
    Filer's total
    $215,677

  • EDWARD NEILAN

    CHIEF MEDICAL & SCIENTIFIC OFFICER

    Total calculated
    $329,637
    From this org
    $270,662
    From related orgs
    $0
    Other
    $58,975
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $270,662
    Bonus
    $0
    Other
    $0
    Deferred
    $14,420
    Nontaxable benefits
    $44,555
    Filer's total
    $329,637

  • PRASHANT GOEL

    VP INFORMATION TECHNOLOGY

    Total calculated
    $297,198
    From this org
    $282,667
    From related orgs
    $0
    Other
    $14,531
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $275,167
    Bonus
    $7,500
    Other
    $0
    Deferred
    $14,167
    Nontaxable benefits
    $364
    Filer's total
    $297,198

  • ALEXA MOORE

    VP OF DEVELOPMENT

    Total calculated
    $246,775
    From this org
    $235,028
    From related orgs
    $0
    Other
    $11,747
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $215,028
    Bonus
    $20,000
    Other
    $0
    Deferred
    $11,747
    Nontaxable benefits
    $0
    Filer's total
    $246,775

  • JILL POLLANDER

    VP PATIENT SERVICES

    Total calculated
    $203,447
    From this org
    $179,475
    From related orgs
    $0
    Other
    $23,972
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $176,975
    Bonus
    $2,500
    Other
    $0
    Deferred
    $9,137
    Nontaxable benefits
    $14,835
    Filer's total
    $203,447

  • LISA SARFATY

    VP COMMUNITY ENGAGEMENT

    Total calculated
    $227,907
    From this org
    $173,427
    From related orgs
    $0
    Other
    $54,480
    Hours/week
    35

    Schedule J breakdown matched by us

    Base
    $170,927
    Bonus
    $2,500
    Other
    $0
    Deferred
    $9,137
    Nontaxable benefits
    $45,343
    Filer's total
    $227,907

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 — 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

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

The filer's explanations (Part III)

PART I, LINE 3
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
2023
Filed
29 May 2024
IRS schema version
2023v5.0
Source object
202421529349300917

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