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BARDET BIEDL SYNDROME FOUNDATION

EIN 46-3343666 WEST CHESTER, PA

Revenue 2024
$396,830
Expenses 2024
$167,052

Program services were 65.2% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
E60
Classification
1000
Street
403 OERMEAD LN

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).

Mission and programs · 2024

Mission

THE ORGANIZATION'S MISSION IS TO BUILD A COMMUNITY OF SUPPORT FOR INDIVIDUALS AND FAMILIES, PROVIDE INFORMATION ABOUT BARDET BIEDL SYNDROME, AND PROMOTE SCIENCE AND RESEARCH TO IMPROVE THE LIVES OF INDIVIDUALS WITH BARDET BIEDL SYNDROME.

  • RESEARCH THE ORGANIZATION PROVIDED RESEARCH GRANTS TO SUPPORT THE CRIBBS REGISTRY. ORGANIZATION LEADERSHIP ATTENDED SCIENTIFIC CONFERENCES TO ADVANCE RESEARCH EFFORTS RELEVANT TO THE COMMUNITY INCLUDING EMBO CILIA IN OCTOBER 2024 AND THE CHAN ZUCKERBERG INITIATIVE RARE AS ONE SUMMIT IN MAY 2025. PRESIDENT TIM OGDEN CO-AUTHORED A PEER REVIEWED PUBLICATION ON EFFECTIVE COLLABORATION BETWEEN PATIENT GROUPS AND RESEARCHERS.

    Expenses $79,365 · Grants $77,375

  • COMMUNITY SUPPORT THE ORGANIZATION CONNECTED FAMILIES AND SHARED INFORMATION ON RESEARCH, THERAPIES, AND CARE FOR BARDET BIEDL SYNDROME. THIS INCLUDED HOSTING A CONFERENCE FOR APPROXIMATELY 200 PEOPLE IN JULY 2024, AND A SERIES OF WEBINARS AND LOCAL MEETINGS FOR MEMBERS AND THE GENERAL PUBLIC.

    Expenses $29,544

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Timothy Ogden

    PRESIDENT

    Total calculated
    $0
    Hours/week
    5

  • Alex Ogeka

    VICE PRESIDE

    Total calculated
    $0
    Hours/week
    1

  • Nathan Arnesen

    TREASURER

    Total calculated
    $0
    Hours/week
    1

  • Dave Pothier

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

  • Tara Klassen

    BOARD MEMBER

    Total calculated
    $0
    Hours/week
    1

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. Earlier years are each on their own filing page.

Filings

  • 2024
    Revenue
    $396,830
    Expenses
    $167,052
    Contributions
    $396,828
    Grants paid
    $77,375
  • 2023
    Revenue
    $129,672
    Expenses
    $166,916
    Contributions
    $129,661
    Grants paid
    $127,375
  • 2022
    Revenue
    $372,565
    Expenses
    $172,225
    Contributions
    $372,549
    Grants paid
    $100,000

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.

Other returns filed

  • 2021 · 990-EZ

    Revenue
    $156,492
    Expenses
    $167,405
    Assets (EOY)
    $215,525

  • 2020 · 990-EZ

    Revenue
    $74,680
    Expenses
    $46,462
    Assets (EOY)
    $226,438

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Form 990-N e-Postcard, tax year 2018

Tax period
1 August 2018 to 31 July 2019
Principal officer
Timothy Ogden
Mailing address
403 Oermead LaneWest Chester PA 19380
Website
www.bardetbiedl.org

As filed, from the IRS e-Postcard file of 26 October 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

Where these grants went next →

Grants received

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 13 October 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.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 29 October 2026, for every organization at once. Returns through tax year 2024, the newest we have parsed for this organization.