PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS ADVOCACY AND RESOURCE

As filed

Subsection

03

NTEE code

G01

Classification

1000

Street

PO BOX 551

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

• In 2025 PFIC Network provided program services in the areas of peer support, education, outreach, advocacy and research to further our mission of improving the lives of patients and families affected by PFIC worldwide. We continued to offer care packages, conference travel scholarships and direct financial assistance to patients and families in more than 10 countries. In June, we completed IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information), a two-year project which produced a research roadmap of patient-identified priorities and helped us build an educated and motivated body of patients and families interested in pursuing further involvement in research. This project was funded by a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Additionally, we were awarded a second PCORI Engagement Award (EACB-42398) to build on the work started in IMPACT by establishing a patient-centered research consortium. In July, we co-hosted the first-ever Cholestatic Liver Disease Summit alongside two other cholestatic liver disease organizations, Biliary Atrestia Research and Education and Alagille Syndrome Alliance, in lieu of our annual PFIC Family and Scientific Conference. The conference hosted over 300 attendees over 3 days in Aurora, Colorado. Collaborating with related disease groups allowed us to expand our network of clinicians and researchers, provide more opportunities for peer connection through the larger numbers of patients and families in attendance, and open the door for multi-organization collaboration in cholestatic liver disease research. Other program highlights include co-authoring and publishing the first manuscript sharing patient-reported outcomes from our patient registry and directly funding a research study aimed at identifying genetic causes of cholestasis in undiagnosed children. In addition to support and research accomplishments, PFIC Network put significant effort into enhancing the user interface for our website, our main platform for delivering education materials. PFIC Network has also added material on adults, genetics and diagnosis, and plans to add new content into 2026 while continuing to assess and respond to the educational needs of our community.

  Expenses $384,544 · Grants $96,512

As filed on the 2025 return.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

• 2025

  Revenue

  $696,612

  Expenses

  $529,691

  Contributions

  $712,530

  Grants paid

  $96,512

• 2024

  Revenue

  $352,401

  Expenses

  $502,308

  Contributions

  $360,740

  Grants paid

  $35,119

• 2023

  Revenue

  $365,826

  Expenses

  $470,106

  Contributions

  $361,368

  Grants paid

  $5,565

• 2022

  Revenue

  $270,986

  Expenses

  $527,048

  Contributions

  $266,086

  Grants paid

  $30,000

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $808,755

  Expenses

  $235,204

  Assets (EOY)

  $718,340

• 2020 · 990-EZ

  Revenue

  $101,541

  Expenses

  $77,107

  Assets (EOY)

  $99,034

• 2019 · 990-EZ

  Revenue

  $130,613

  Expenses

  $61,906

  Assets (EOY)

  $71,752

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all.

Form 990-N e-Postcard, tax year 2018

Tax period

1 January 2018 to 31 December 2018

Principal officer

Emily Ventura

Mailing address

295 JONES RDBEATTYVILLE KY 41311

Website

www.pfic.org

As filed, from the IRS e-Postcard file of 26 October 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

• UCSF Benioff Childrens Hospitals

  $81,748

  2025

Where these grants went next →

Grants received

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $70,100

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $50,000

  2022 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $40,000

  2023 · For grant recipient's exempt purposes

• DONOR ADVISED CHARITABLE GIVING

  $22,600

  2024 · HEALTH

• GLOBAL GENES

  $15,000

  2022 · HEALTH EQUITY GRANT

• FORGOOD INC

  $6,055

  2022 · UNRESTRICTED

• FORGOOD INC

  $5,639

  2023 · UNRESTRICTED

Other IRS files