PRIMARY BILIARY CHOLANGITIS ORGANIZATION AKA PBCERS

There is Life after PBC diagnosis.

aka PBCers Organization   |   Rochester, NY   |  http://pbcers.org

Mission

PBC education & support Unite people with Primary Biliary Cholangitis, help them cope with their disease and improve the quality of their lives through support and education. Provide education and support for family members and friends of people with PBC. Via the internet and other media, raise public awareness regarding PBC, the need for research and organ donation. Raise funds to support research that leads to identifying a cure for PBC. Host and organize PBC national conferences for patients, family members and friends to share information about current research, fundraising, educational programs, and to provide an opportunity for those with PBC and their loved ones to network with other PBC patients. Build a robust patient registry. No paid employees. Operated by all volunteers.

Ruling year info

2000

President

Carol Roberts

Vice President

Cathy Mumford

Main address

1014 A Greenleaf Road

Rochester, NY 14612 USA

Show more contact info

Formerly known as

PBC PSC Group

EIN

76-0622718

NTEE code info

Nonmonetary Support N.E.C. (G19)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Little known about PBC as a rare disease in the general public and the medical community.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

PBCers Group on groups.io

E-mail group on groups.io: As a group, we discuss PBC information, pain management, medications, research, ask questions, transplantation, vent our anger & fears, speak freely on the ups and downs of daily living, share our personal experiences and build lasting friendships.

Population(s) Served
People with diseases and illnesses
Adults

www.facebook.com/PBCersOrg
As a group, we discuss medical information, pain management, medications, research, ask questions, transplantation, vent our anger & fears, speak freely on the ups and downs of daily living, share our personal experiences and build lasting friendships.

Population(s) Served
People with diseases and illnesses
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Educating and offering support to PBC patients and care givers. Helping educate the medical community and promoting PBC awareness in the general public as well as working to support research and clinical trials for additional treatments for disease and its symptoms. Ultimately help find a cure!

Promoting PBC awareness on Facebook, Twitter, website and at medical facilities. Host patient education conferences so people have updated and accurate information about their disease. Attend major medical conferences (such as AASLD's Liver Meeting) to connect with clinicians, researchers and pharmaceuticals so they are aware of our organization and what we can do to help support their patients. We have translated our main printed information to Spanish.

We enlist Volunteer patients and caregivers for their help and apply for corporate grants to fund our educational and organizational expenses.

Started with 3 members and now have 6,000+ on various platforms. We have worked with researchers and pharmaceuticals to get patients into trials for new treatments. We will be hosting our 15th patient education conference in October 2022 and since 2000 have raised over $700,00.00 for research projects.

We are working with several pharmas to make sure people are aware of their clinical trials and the importance of participating in them if possible. In 2019 we launched a Patient Registry in partnership with Sanford CoRDS to provide researchers will access to our members combined health histories.

Financials

PRIMARY BILIARY CHOLANGITIS ORGANIZATION AKA PBCERS
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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PRIMARY BILIARY CHOLANGITIS ORGANIZATION AKA PBCERS

Board of directors
as of 2/11/2022
SOURCE: Self-reported by organization
Board co-chair

Carol Roberts

PBCers Organization

Term: 2020 -


Board co-chair

Cathy Mumford

PBCers Organization

Term: 2020 -

Brenda Jones

PBCers Organization

Tim Snakenberg

PBCers Organization

Richard Kim

PBCers Orgamization

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 02/11/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data