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PRIMARY BILIARY CHOLANGITIS ORGANIZATION
ROCHESTER, NY · EIN 760622718 · Form 990EZ · FY2023 · NTEE G120 · Voluntary Health Associations · Micro (<$100K) · pbcers.org
revenue
$66K
expenses
$65K
net assets
$118K
employees
—
mission · from form 990

PRIMARY BILIARY CHOLANGITIS EDUCATION AND SUPPORT

profile · synthesized from sources

Primary Biliary Cholangitis Organization is a nonprofit based in Rochester, NY, dedicated to education and support for individuals affected by primary biliary cholangitis (PBC). The organization provides resources on diagnosis, disease progression, and treatment options, including FDA-approved therapies and liver transplantation. It serves patients and caregivers through informational content and community support.

named programs · 2 · from sources

What they call their work

Living With PBC
Comprehensive educational resource providing information on PBC diagnosis, disease progression, treatment options, and management strategies.
Transplant Support
Information and guidance for patients considering or recovering from liver transplantation, including MELD scoring, living donation, and post-transplant rehabilitation.
activities · 4 groups

What they do

  • Liver Disease Research and Support 6 activities
    • Connecting patients to clinical trials
      Provides access to Antidote Match, a tool that matches individuals with PBC to recruiting clinical trials, helping patients participate in research and treatment development.
    • Developing patient tools for medication management
      Provides a URSO dose calculator tool to help individuals with PBC manage their ursodiol medication based on weight and clinical guidelines.
    • Operating a PBC Patient Registry to support research
      Manages a patient registry in partnership with CoRDS that allows individuals with PBC to share health data with researchers and learn about clinical trials. Facilitates researcher access to de-identified data to study treatment efficacy and advance clinical care.
    • Promoting diagnostic testing for PBC
      Conducts and promotes antimitochondrial antibody (AMA) testing to support early diagnosis of Primary Biliary Cholangitis.
    • Providing education and resources on Primary Biliary Cholangitis
      Offers comprehensive educational materials about PBC, including symptoms, diagnosis, testing, and treatment options such as weight-based ursodiol dosing. Distributes brochures and postcards in English and Spanish, and compiles medical information from external sources for patient use.
    • Supporting PBC research collaborations
      Participates in PBC research initiatives, including collaborations with Dr. Eric Gershwin at UC Davis and other global research projects, to advance understanding and treatment of the disease.
  • Volunteer Engagement and Capacity Support 1 activity
    • Engaging volunteers
      Recruits and engages volunteers to support organizational activities and advance the mission of the Primary Biliary Cholangitis Organization.
  • Patient and Researcher Conferences 1 activity
    • Hosting annual PBCers Conference
      Organizes an annual educational conference for patients and healthcare professionals, featuring expert talks on PBC research and treatment. Hosted the first patient-doctor conference in 1999 and continues with planned events through 2025.
  • Peer-Led Mental Health Support Groups 1 activity
    • Operating support groups and peer communities
      Provides online and in-person support groups for individuals with PBC, care partners, and healthcare providers. Maintains public and closed Facebook groups and an official support group with a chatroom, email digest, and mailing address established in 1996.
financials · form 990EZ · fy2023
revenue
Total revenue$66K
Contributions & grants$66K100%
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$65K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$15K
balance sheet
Total assets$118K
Cash—
Investments—
Liabilities—
Net assets$118K
4 years on record · 2020–2023 · YoY revenue -42.2%
leadership · form 990 part vii · fy2023

Who runs it

board members · 2
  • RICHARD KIM — DIRECTOR
  • TIM SNAKENBERG — DIRECTOR
relationships · 10

Who they work with

  • American Liver Foundation Network — References leadership role of Keith Lindor, MD, formerly with the American Liver Foundation, in PBC research and treatment guidance.
  • American Liver Foundation Partner — Collaborates with PBCers Organization on the “PBC Fund the Cure” fundraising initiative.
  • Antidote Partner — Provides access to Antidote Match, a tool that connects patients with recruiting clinical trials.
  • Antidote Match Partner — Partners with Antidote Match to help connect individuals with PBC to clinical trials.
  • CoRDS (Coordination of Rare Diseases at Sanford) Partner — Partnered to create and maintain a patient registry for Primary Biliary Cholangitis.
  • DoveMed Partner — Partners with DoveMed to compile and share medical information on PBC diagnosis and testing.
  • Dr. Eric Gershwin Partner — Collaborates with PBCers Organization on ongoing PBC research projects at University of California, Davis.
  • Facebook Partner — Hosts public and closed private support groups for the organization.
  • Primary Biliary Cholangitis Network — Organization focuses on Primary Biliary Cholangitis as its central mission and awareness area.
  • X Partner — Platform used to share up-to-date information about PBC and the PBCers Organization.
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Early Diagnosis and Timely Treatment
    methodology: early-diagnosis-and-treatment
    By promoting early diagnosis and immediate pharmacological intervention, the organization aims to prevent disease progression in primary biliary cholangitis, because early clinical action is critical to preserving liver function and improving long-term outcomes.
  • Multilingual Health Equity Outreach
    methodology: multilingual_education_outreach
    By distributing educational materials in multiple languages, the organization increases accessibility and awareness of PBC among diverse populations, because language-appropriate resources reduce disparities in diagnosis and care for underserved communities.
  • Patient-Engaged Research Model
    methodology: patient-engaged research
    By actively involving patients in research registries, clinical trials, and funding decisions, the organization accelerates patient-centered research, because direct patient engagement ensures relevance, improves recruitment, and aligns scientific priorities with lived experience.
  • Peer Support as Empowerment
    methodology: peer_support
    By facilitating moderated peer support communities and broader community connections, the organization empowers individuals with PBC and amplifies patient voices, because safe, shared experiences foster emotional resilience, reduce isolation, and strengthen collective advocacy.
  • Personalized Treatment Advocacy
    methodology: personalized_medicine
    By advocating for personalized, weight-based ursodiol dosing, the organization seeks to maximize treatment efficacy in PBC patients, because standardized dosing may under- or over-treat individuals, reducing therapeutic outcomes.