Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

PFIC Awareness, #StopTheItch, #ItchingForACure

aka PFIC Network   |   Stanton, KY   |
GuideStar Charity Check

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

EIN: 83-1084501


To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. We support research programs, provide educational materials, match families for peer support, and participate in advocacy opportunities.

Ruling year info


Executive Director

Emily Ventura

Main address

PO Box 551

Stanton, KY 40312 USA

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Subject area info

Patient-centered care

Hospital care



Organ transplantation

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Population served info

Children and youth


NTEE code info

Alliance/Advocacy Organizations (G01)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Show Forms 990



Programs and results

What we aim to solve

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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?

Parent Ambassador Program

A peer mentorship program for those seeking education and connection to resources.

Population(s) Served
Children and youth

The PFIC Financial Assistance Program is designed to help offset costs that may occur due to the burden of illness that PFIC can place on a family’s daily life.

The cost of being a patient with a chronic illness can be consuming, even more so for a rare chronic illness. The need for financial assistance is an essential to allow families to overcome these burdens.

Examples of Expenses that can be covered:

Home: Rent/mortgage or Utilities (ex. electric, water, etc.)
Vehicle: Car payments or car insurance
Medical: Medical expenses not covered by insurance (genetic testing included)
Education: Tuition payment, books, tutor payments, etc.

The Patient Assistance Program will accept applications from any person who is currently receiving treatment for PFIC, as well as any parent, guardian or caregiver of a child who is currently receiving treatment for PFIC. Additionally, applications will be accepted from a dependent of a person who is currently receiving treatment for PFIC.

Population(s) Served

This program aims to identify patients or caregivers who may need additional emotional support during tough times. Funds are set aside to send care packages to those who could use extra support. Examples of such times could be on initial diagnosis, during a hospitalization, waiting for a liver transplant or a tired family coping with an itchy child. Anyone can nominate a patient or family for the Care Program. Parent Ambassadors, Board members and volunteers will coordinate with the person who nominates to put together and send a care package with a value of less than or equal to $50 USD. Care packages can be sent to a person in any country, but must be sent by a member of the PFIC Network.

Population(s) Served

A program that is driven by our PFIC children to bring families closer together. PFIC Pals has a few programs including a Christmas card exchange and pen pals program. Most recently, coordinated Zoom meeting efforts! PFIC Pals will also send care packages to children who are in the hospital for surgeries. PFIC Pals is always welcome to new ideas to involve the community and our children.

Population(s) Served

A mental health professional, board-certified and Licensed Master Social Worker (LMSW) or Licensed Clinical Social Worker (LCSW-C), will offer up to four (4) bereavement therapy sessions for any member of the family. These sessions will be held through a telehealth platform (Zoom, Microsoft Teams,, etc.) and appointments will be scheduled based on shared availability of the mental health professional and the family member. During these sessions, the mental health professional will also work to connect the family member to local mental health treatment and services, as needed, in the event continued and on-going support is requested.

Who can access this program: Any patient or family who is struggling with the emotional burden of PFIC OR who has suffered a loss due to PFIC. To initiate, a family member (or someone on behalf of the family) can access this program by contacting the PFIC Network.

Population(s) Served
Children and youth

The PFIC Network will provide ongoing and updated ways to distribute available and relevant information about PFIC. This program will focus on identifying needs of the patient and healthcare community from all angles and gather resources to create solutions The website,, will be the primary focus of this program with an expected relaunch date of February 29, 2020. The moderator will be responsible for keeping the website current. Informational brochures, webinars, podcasts and a content moderator will be essential contributions to this program in the long term. The medical advisory board will have a direct connection to this program as they will be an essential resource to provide relevant content.

Population(s) Served

The PFIC Network will sponsor attendance at major conferences including Global Genes, NORD, AASLD, EASL. In addition to participating in these conferences, we will also host poster presentations at a minimum of 2 events. We will also take part in opportunities to travel to regulatory and governing bodies to lend our voice or speak of our needs. We will provide opportunities to engage with local, state, and national policy makers and regulators to promote advancement of PFIC research and treatment options.

Population(s) Served

This scholarship program will provide assistance and startup funding for teams that have shown dedication to the PFIC Network and it’s mission, and strive to further it’s mission in their own country. This is an affiliate program, so the scholarship will only support those groups that are looking to be an extension of the PFIC Network. The goal is not to divide, but more so to create a stronger official presence in those areas of higher need and interest.

Population(s) Served
People with diseases and illnesses
Family relationships
Ethnic and racial groups

Where we work

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients and families affected by Progressive Familial Intrahepatic Cholestasis (PFIC) and PFIC-related disorders.

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • What significant change resulted from feedback?

    We are a U.S.-based organization that serves a global population and we received feedback from international community members who wanted resources and advocacy opportunities that were more accessible and relevant to them. In response, we expanded our non-English language offerings, including translating our educational brochure into 18+ different languages, hiring live interpreters for meetings and launching a quarterly International Alliance meeting with a specific focus on global issues facing PFIC patients and their families. We are also in the process of translating our patient registry, so that patients without English fluency can participate.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We serve a small community and don't want to overburden community members with requests


Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Financial data

Source: IRS Form 990 info

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990

Fiscal year ending: cloud_download Download Data

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data


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

Form 1023/1024 is not available for this organization

Executive Director

Emily Ventura

Chief Executive Director of the PFIC Network, Inc. I have a strong connection to the PFIC patient community as both a caregiver to a PFIC patient and an advocate. I have 10 years of experience as a Critical Care Registered Nurse before creating and leading the PFIC Network, a patient centered, parent led advocacy organization. Our mission is to improve the lives of patients and families affected by PFIC worldwide.

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

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Compensation data
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There are no highest paid employees recorded for this organization.

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Board of directors
as of 03/16/2023
SOURCE: Self-reported by organization
Board of directors data
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Board chair

Walter Perez

Tara Kearns

Hayley Watts

Erin Hovey

Charmaine Gravener

Organizational demographics

SOURCE: Self-reported; last updated 5/14/2022

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.


The organization's leader identifies as:

Race & ethnicity
Gender identity

Race & ethnicity

Gender identity


Sexual orientation


We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 06/14/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.