Skip to content
Nonprofiteer
← All organizations

NATIONAL ORGANIZATION FOR RARE DISORDERS INC

EIN 13-3223946 DANBURY, CT

Revenue 2025
$34,577,196
Expenses 2025
$40,401,111

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

As filed

Subsection
03
Classification
1000
Street
7 KENOSIA AVENUE

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • 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 — 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. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $34,577,196
    Expenses
    $40,401,111
    Contributions
    $23,944,805
    Grants paid
    $22,081,890
  • 2024
    Revenue
    $50,676,798
    Expenses
    $43,034,462
    Contributions
    $40,390,497
    Grants paid
    $23,396,846
  • 2023
    Revenue
    $66,397,453
    Expenses
    $52,832,739
    Contributions
    $55,591,572
    Grants paid
    $35,012,233
  • 2022
    Revenue
    $59,872,383
    Expenses
    $48,420,739
    Contributions
    $51,401,122
    Grants paid
    $33,039,892

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 10 September 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.