Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

PFIC Awareness, StopTheItch, ItchingForACure

aka PFIC Network   |   Stanton, KY   |  www.pfic.org

Mission

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

2018

Executive Director

Emily Ventura

Main address

PO Box 551

Stanton, KY 40312 USA

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EIN

83-1084501

NTEE code info

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

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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
Families
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

pfic network program bereavment
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, Doxy.me, 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

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, pfic.org, 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

Financials

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
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Operations

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Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Board of directors
as of 5/28/2021
SOURCE: Self-reported by organization
Board co-chair

Emiy Ventura


Board co-chair

Melanie Karakaidos

Tara Kearns