2026-08-26T17:32:32-06:00 2025-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2025-01-01 831084501 Progressive Familial Intrahepatic Cholestasis % Emily Ventura PROG 4143313316 PO Box 551 Stanton KY 40380 EMILY VENTURA Co-Founder Executive Director 4143313316 2026-08-26 true JOHN MULLINS P01429307 2027706371 2026-08-26 2025 2025-03-06 01:10:19Z contd Advocacy and Resource Ne Emily Ventura PO Box 551 Stanton KY 40380 720052 false X www.pfic.org X 2018 KY To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. 8 6 4 30 0 0 360740 712530 0 341 -8339 -16259 352401 696612 35119 96512 0 209495 184345 0 49041 257694 248834 502308 529691 -149907 166921 212778 458434 30539 109274 182239 349160 To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. false false 384544 96512 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. 384544 true true false false false false false false false false false false false false false true true false false false false false true false true false false true true false false false false false false false false false false false false false false false false false false true 5 0 true 4 true false false false false false false false false false false false false X 8 6 false false false false false false false true true false false true true true true true true true false false CA CO CT FL GA HI IL KS KY MA MD MI NC NJ OH PA SC TN UT VA WI WV X Organization 4143313316 PO Box 551 Stanton KY 40380 Emily Ventura Co-Founder Executive Director 40.00 0.00 X X 73041 0 1091 Tara Kearns Co-Founder 2.00 0.00 X X 3775 0 0 Walter Perez President 2.00 0.00 X X 0 0 0 Hayley Ardila Treasurer 2.00 0.00 X X 0 0 0 Charmaine Gravener Vice President 1.00 0.00 X X 0 0 0 Erin Hovey Secretary 2.00 0.00 X X 0 0 0 Erik Lontok Director 1.00 0.00 X 0 0 0 Tyler Bradley Director 1.00 0.00 X 0 0 0 76816 0 1091 0 false false false 32678 679852 14550 712530 341 341 7181 32678 23440 -16259 -16259 696612 0 0 -15918 X 81748 81748 8952 8952 5812 5812 76816 37762 28757 10297 88195 51925 23483 12787 5782 5782 13552 7150 4511 1891 1460 800 500 160 9880 9880 163228 140080 2235 20913 1610 859 751 10163 8876 1098 189 23202 2838 18700 1664 38065 37742 -66 389 1226 1226 529691 384544 96106 49041 133525 354364 79253 104070 212778 458434 30539 109274 30539 109274 X 136914 297241 45325 51919 182239 349160 212778 458434 166921 0 X false true X true false X 808129 266086 361368 324789 679852 2440224 808129 266086 361368 324789 679852 2440224 746614 1693610 341 341 626 4900 6915 7082 19523 2460088 0.68840 0.74230 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 696612 696612 696612 529691 529691 529691 Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740) PFIC is exempt from federal income taxes under Section 501(c)(3) of the Internal Revenue Code. The accounting standard on accounting for uncertainty in income taxes addresses the determination of whether tax benefits claimed or expected to be claimed on a tax return should be recorded in the financial statements. Under that guidance, PFIC may recognize the tax benefit from an uncertain tax position only if it is more likely than not that the tax position will be sustained on examination by taxing authorities based on the technical merits of the position. Examples of tax positions include the tax-exempt status of PFIC and various positions related to the potential sources of unrelated business taxable income (UBIT). The tax benefits recognized in the financial statements from such a position are measured based on the largest benefit that has a greater than 50 likelihood of being realized upon ultimate settlement. There were no unrecognized tax benefits identified or recorded as liabilities for at year end.PFICs policy would be to recognize interest and penalties, if any, on tax positions related to its unrecognized tax benefits in income tax expense in the financial statements. No interest and penalties were assessed or recorded during the year then ended. PFICs IRS Forms 990 that have been filed are subject to examination by the Internal Revenue Service, generally for three years after they were filed. Financial Assistance Europe including Iceland and Greenland 2 2000 Financial Assistance North America Not the United States 2 1812 Financial Assistance Middle East and North Africa 1 1000 Financial Assistance Sub-Saharan Africa 1 1000 false false false false false false Fundraising 39859 32678 7181 23440 39859 32678 7181 23440 23440 -16259 true UCSF Benioff Childrens Hospitals 1111 Franklin Street 9th Flr Oakland CA 946075201 941657474 501C3 81748 1 Scholarships 7 8952 Form 990 governing body review Part VI line 11 The Form 990 is prepared by a Certified Public Accountant. It is reviewed by the Executive Director and full Board before being filed. Conflict of interest policy compliance Part VI line 12c The Organization has updated its written conflict of interest policy. Officers and directors are required to report interests that could give rise to conflicts. CEO executive director top management comp Part VI line 15a The compensation of the Executive Director is established by the Board, and is part of the budget process. Governing documents etc available to public Part VI line 19 The Organization makes required documents available upon request, in accordance with IRS guidance. List of other fees for services expenses Part IX line 11g Other Professional Fees $144,482 Professional Fundraising Fees $5,236