Bardet Biedl Syndrome Foundation

Nonprofit profile at a glance

EIN
463343666
IRS 990 coverage
2022–2024
Forms available
Form 990 2024, Form 990-EZ 2023, Form 990-N 2018
Location
West Chester, PA, USA
Phone
8018503750
Rating
72
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Health Support Services

Official website

Reported finances

Revenue
$396,830
Expenses
$167,052
Assets
$609,072
Liabilities
$673

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

5 people listed

Executive titles in this filing

  • TIMOTHY OGDEN (PRESIDENT)

People named in this filing

  • TIMOTHY OGDEN (PRESIDENT)
  • ALEX OGEKA (VICE PRESIDE)
  • NATHAN ARNESEN (TREASURER)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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.

What it reported doing in 2024

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.

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 71% of its reported program spending out as grants.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and program spending has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 47
  • Transparency & Controls: 94
  • Accountability: 88
  • Sustainability: 80
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 27.4%; rating input score 27
  • Program expense ratio: 65.2%; rating input score 65
  • Fundraising efficiency: $193.48 raised per $1 spent on fundraising; rating input score 91; 91st percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 80th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 57.9%; rating input score 94; 94th percentile among comparable filings
  • Total-asset coverage ratio: 3.65; rating input score 73; 73rd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 56; 56th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 69; 69th percentile among comparable filings

Growth

  • Program expense growth: -22.5% per year; rating input score 0; 5th percentile among comparable filings
  • Revenue growth: 24.9% per year; rating input score 100; 91st percentile among comparable filings
  • Asset growth: 20.7% per year; rating input score 100; 85th percentile among comparable filings

Details

  • Where the money goes: 27.4% of revenue deployed · 65.2% of spending went to programs
  • Governance: 5 of 5 board members independent · 5 of 7 filing controls reported
  • Programs: 2 filed program accomplishments · $109K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 23 of 23 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 2 filing years from 2022 to 2024
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Mission deployment rate scored 27/100.
  • High — Growth: Program expense growth scored 0/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Review — Sustainability: Liabilities to assets ratio scored 56/100.