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Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Supporting PFIC patients and families globally, #pficawareness, #ItchingForACure

aka PFIC Network   |   Stanton, KY   |  www.pfic.org
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Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

EIN: 83-1084501


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

Subject area info

Patient-centered care

Hospital care

Gastroenterology

Genetics

Organ transplantation

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Population served info

Children and youth

Families

Researchers

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

Communication

Blog

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?

PFIC Network Patient Registry

The PFIC Network Patient Registry is a secure data collection where PFIC patients or their caretakers provide information about their experience with the disease. We collect patient-reported outcomes every six months about diagnosis, symptoms, treatment, itch, sleep, general health and family quality of life. It was initiated in response to the difficulty of locating PFIC patients and data to conduct research on our rare disease. Our aim with the patient registry has been to add the patient’s voice to every facet of PFIC research and to facilitate and speed up PFIC research. As more PFIC patients participate in the registry, researchers can conduct larger clinical trials for PFIC disease and symptom treatments, and eventually discover a cure. The registry can also assist with our goal to improve the lives of PFIC patients and families worldwide. We use registry data to help identify knowledge and resource gaps so that we can work on creating solutions for the global patient community.

Population(s) Served
Families
Children and youth
Researchers
People with diseases and illnesses

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
People with diseases and illnesses
Families
Children and youth

Often times, members of the PFIC community may need a little pick me up. Whether it relates to spending time in the hospital, getting ready for surgery, dealing with the horrendous itch, or simply receiving a new diagnosis of PFIC and feeling lost, sometimes a reminder that you are loved and supported and not alone on the PFIC journey is needed. We may not always be able to provide all the answers or ease all the burdens of living with a chronic disease, but we can try to brighten a moment of your day. We are all in this together and no PFIC patient should feel like they are fighting alone.

PFIC patients and parents or caretakers of PFIC patients are eligible to receive a free care package sent on your behalf from PFIC Network. Work with our team to send a custom package to a patient, caregiver or family member who is fighting through the PFIC journey. Packages typically contain one of our custom PFIC Network “Itching For a Cure” stuffed animals.

Population(s) Served
Children and youth
Families
People with diseases and illnesses

We work to bring together PFIC patients & families, clinicians, researchers and industry stakeholders in order to share scientific knowledge, share patient experiences, and identify ways that we can collectively improve the lives of patients and families affected by PFIC worldwide.

Population(s) Served
Families
Researchers
People with diseases and illnesses

Virtual PFIC Support Groups provide a safe and welcoming space in which patients, family members and caregivers of PFIC patients can connect with one another, share their experiences, and offer one another support. All patients, caregivers, and family members are invited to join. The experience of living with a rare disease or caring for someone who has one can be exhausting, overwhelming, and isolating. It’s important to have a space in which you feel seen, heard, and valued. Our goal is to make our support groups into just such a space, so that participants leave feeling connected, understood, and recharged. We offer three separate PFIC support groups: adult patients, caregivers and grandparents. Meetings are held over Zoom and facilitated by a mental health professional with a degree in Masters Degree in Counseling Psychology and personal experience with chronic illness. Private coaching sessions with our facilitator are also available.

Population(s) Served
People with diseases and illnesses
Families
Parents
Children and youth

We provide ongoing and updated ways to distribute available and relevant information about PFIC and related diseases. We focus on identifying needs of the patient and healthcare community from all angles and gather resources to create solutions. From translating our award-winning educational brochure into 19 different languages to our free library of webinars from PFIC experts, we work to make lay-friendly disease education accessible and inclusive to the PFIC community. We operate our website, pfic.org, as a hub of information for PFIC patients and their families.

Population(s) Served
Families
Children and youth
Parents
People with diseases and illnesses

Through our advocacy efforts, we hope to create an empowered global PFIC community.
1.International Alliance: We host[a virtual meeting series where members of the global PFIC community come together to raise awareness, identify country-specific resource and knowledge gaps, and advance research and patient education on a worldwide scale.
2.Rare Disease Conferences: We actively participate in rare disease conferences, partnering with other organizations to advocate for increased education, research, and funding for rare diseases.
3.Scientific and Medical Conferences: We also attend scientific and medical conferences to build partnerships with healthcare providers and researchers.
4. Regulatory & Governmental Advocacy: We take part in opportunities to speak to regulatory and governing bodies about issues facing the PFIC community.

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

IMPACT is an acronym for: “Identifying research targets by Merging Patient And Clinician Treatment information.” The goal of this project is to prepare the PFIC community for patient-centered outcomes research by July 2025. IMPACT is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Throughout this project, we will educate our community of PFIC patients, parents, clinicians, and researchers about patient-centered outcomes research using learning modules and focus groups. Our goal is to build partnerships & co-create a PFIC research roadmap with patient priorities at the center. Once our project is complete in 2025, we will use our community-established priorities and guidelines for conducting research to pursue the first PFIC patient-centered outcomes research study together!

Population(s) Served
Caregivers
Families
Parents
Adults
Children and youth
Caregivers
Families
Parents
Adults
Children and youth
Researchers

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.
  • 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

  • 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

Financials

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.
Fiscal year: Jan 01 - Dec 31
Financial documents
2022 PFIC Network 2021 Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network Inc
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

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

Liquidity in 2022 info

SOURCE: IRS Form 990

5.53

Average of 4.46 over 4 years

Months of cash in 2022 info

SOURCE: IRS Form 990

6.4

Average of 5.7 over 4 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

10%

Average of 4% over 4 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

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 info

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

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2021 2022
Unrestricted surplus (deficit) before depreciation -$26,449 -$8,580
As % of expenses -11.2% -1.6%
Unrestricted surplus (deficit) after depreciation -$26,449 -$8,580
As % of expenses -11.2% -1.6%
Revenue composition info
Total revenue (unrestricted & restricted) $808,755 $270,986
Total revenue, % change over prior year 0.0% -66.5%
Program services revenue 0.0% 0.0%
Membership dues 0.0% 0.0%
Investment income 0.0% 0.0%
Government grants 0.0% 0.0%
All other grants and contributions 99.9% 98.2%
Other revenue 0.1% 1.8%
Expense composition info
Total expenses before depreciation $235,204 $527,048
Total expenses, % change over prior year 0.0% 124.1%
Personnel 38.7% 39.4%
Professional fees 39.0% 27.1%
Occupancy 0.0% 0.0%
Interest 0.0% 0.0%
Pass-through 4.5% 5.7%
All other expenses 17.9% 27.8%
Full cost components (estimated) info 2021 2022
Total expenses (after depreciation) $235,204 $527,048
One month of savings $19,600 $43,921
Debt principal payment $0 $0
Fixed asset additions $0 $0
Total full costs (estimated) $254,804 $570,969

Capital structure indicators

Liquidity info 2021 2022
Months of cash 16.2 6.4
Months of cash and investments 16.2 6.4
Months of estimated liquid unrestricted net assets 4.7 1.9
Balance sheet composition info 2021 2022
Cash $318,319 $280,906
Investments $0 $0
Receivables $400,000 $206,349
Gross land, buildings, equipment (LBE) $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0%
Liabilities (as a % of assets) 3.6% 10.4%
Unrestricted net assets $92,488 $83,908
Temporarily restricted net assets N/A N/A
Permanently restricted net assets N/A N/A
Total restricted net assets $600,000 $352,518
Total net assets $692,488 $436,426

Key data checks

Key data checks info 2021 2022
Material data errors No No

Operations

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

Documents
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.

Number of employees

Source: IRS Form 990

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network, Inc.

Board of directors
as of 02/05/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Walter Perez

Tara Kearns

Hayley Watts

Erin Hovey

Charmaine Gravener

Organizational demographics

SOURCE: Self-reported; last updated 2/5/2024

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

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

Data
  • 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.