PBCers Organization

Legal name: Primary Biliary Cholangitis Organization

Nonprofit profile at a glance

EIN
760622718
IRS 990 coverage
2010–2025
Official website data refreshed
Sep 2026
Forms available
Form 990 2025, Form 990-EZ 2023
Location
Rochester, NY, USA
Phone
585-285-7136
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$41,266
Expenses
$82,304
Assets
$222,276
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

5 people listed

Executive titles in this filing

  • CAROL ROBERTS (PRESIDENT)
  • JEANINE MIONE (VICE PRESIDENT)

People named in this filing

  • TIM SNAKEBERG (DIRECTOR)
  • RICHARD KIM (DIRECTOR)
  • CAROL ROBERTS (PRESIDENT)

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 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The PBCers Organization is the online and in-person support group for people with Primary Biliary Cholangitis (PBC), care partners and health care team members. We're your go-to resource for peer support and the latest information on PBC.

What it reported doing in 2025

The pbcers organization offers pbc patients, family members & friends online support and education designed to help them cope with chronic illness day-to-day living. This includes a website, public, & private social mendia sites (facebook, x, linkedin) & email digest.

Operating model

Revenue model
Earned-program. 84% of the money available for current operations came from fees and other program revenue.
Distribution model
Hybrid. The nonprofit split its reported program spending across 58% for direct work, and 42% for grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 85
  • Transparency & Controls: 88
  • Accountability: 76
  • Sustainability: 35
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 87.9%; rating input score 88
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 90%; rating input score 90; 14th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 81st 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; 64th percentile among comparable filings
  • Governance controls: 3 of 7 controls in place; rating input score 43
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • 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: -99.4%; rating input score 18; 18th percentile among comparable filings
  • Total-asset coverage ratio: 2.7; rating input score 42; 42nd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 66; 66th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 58; 58th percentile among comparable filings

Growth

  • Program expense growth: 5.4% per year; rating input score 100; 64th percentile among comparable filings
  • Revenue growth: 7.8% per year; rating input score 100; 82nd percentile among comparable filings
  • Asset growth: 12.8% per year; rating input score 100; 82nd percentile among comparable filings

Details

  • What they do: 5 programs and campaigns described on the official site · 1 operating location identified
  • Where the money goes: 100% of revenue deployed · 87.9% of spending went to programs
  • Governance: 5 of 5 board members independent · 3 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $72K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 18 of 19 current checks pass · 1 finding to review
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 11 filing years from 2010 to 2025
  • 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.

  • Moderate — Accountability: Governance controls: 3 of 6 not reported.
  • High — Sustainability: Operating margin scored 18/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Moderate — Sustainability: Total-asset coverage ratio scored 42/100.
  • Review — Sustainability: Officer compensation ratio scored 58/100.