2025-07-10T11:33:37-04:00 2024-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2024-01-01 831084501 Progressive Familial Intrahepatic Cholestasis % Emily Ventura PROG 4143313316 PO Box 551 Stanton KY 40380 EMILY VENTURA Co-Founder Executive Director 4143313316 2025-07-10 true true JOHN MULLINS P01429307 2027706371 2025-07-10 2024 2025-03-06 01:10:19Z contd Advocacy and Resource Ne Emily Ventura PO Box 551 Stanton KY 40380 376728 false X www.pfic.org X 2018 KY To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. 7 6 5 30 0 0 361368 360740 0 0 4458 -8339 365826 352401 5565 35119 0 207217 209495 0 59456 257324 257694 470106 502308 -104280 -149907 353142 212778 20996 30539 332146 182239 To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. false false 335003 35119 In 2024, 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 also continued to offer Zoom support groups, 1:1 coaching sessions, financial assistance and care packages to PFIC patients and families in need. In April, we hosted our largest PFIC Family and Scientific Conference yet, with over 130 people attending in person and 60+ attending virtually. The conference brings PFIC researchers, clinicians and industry stakeholders together with PFIC patients and families to discuss unmet needs of the patient community and to provide updates about ongoing PFIC research. This year, we hosted the conference in partnership with Cincinnati Childrens Hospital and Medical Center, allowing us to offer continuing education credits for the first time and to broaden our reach to a wider network of clinicians and researchers. One of our biggest research initiatives for the year was the completion of year one of Project IMPACT (Identifying research targets by Merging Patient And Clinician Treatment information.) The goal of the project is to prepare the PFIC community for patient-centered outcomes research. This two year project runs from July 2023-July 2025 and is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). Our patient registry is now fully translated into Italian, Spanish and Polish and we were able to share initial data collected at a poster presentation at the North American Society For Pediatric Gastroenterology, Hepatology & Nutrition Annual Meeting. We also awarded our second Small Research Grant, a $30,000 funding opportunity for PFIC research. 335003 true true false false false false false false false false false false false false false true true false false false false false false false true false false false false false false false false false false false false false false false false false false false false false false true 8 0 true 5 true false false false false false false false false false false false false X 7 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 71000 0 0 Charmaine Gravener Director 1.00 0.00 X 0 0 0 Erik Lontok Director 1.00 0.00 X 0 0 0 Walter Perez President 2.00 0.00 X X 0 0 0 Tara Kearns Vice-President Co- Founder 2.00 0.00 X X 0 0 0 Hayley Watts Treasurer 2.00 0.00 X X 0 0 0 Erin Hovey Secretary 2.00 0.00 X X 0 0 0 71000 0 0 0 false false false 35951 324789 360740 8906 35951 22219 -13313 -13313 7082 2108 4974 4974 352401 0 0 -8339 X 35119 35119 71000 32951 22929 15120 114146 52974 36863 24309 8248 8248 16101 8083 4877 3141 1120 780 340 9175 9175 149718 117512 18033 14173 1671 920 751 14309 12704 1093 512 6346 2606 2762 978 71954 71354 468 132 3401 3401 502308 335003 107849 59456 248569 133525 104573 79253 353142 212778 20996 30539 20996 30539 X 115092 136914 217054 45325 332146 182239 353142 212778 -149907 0 X false true X true false X 118590 808129 266086 361368 324789 1878962 118590 808129 266086 361368 324789 1878962 462931 1416031 9086 626 4900 6915 7082 28609 1907571 0.74230 0.00000 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 352401 352401 352401 502308 502308 502308 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. Fundraising 44857 35951 8906 22219 44857 35951 8906 22219 22219 -13313 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 $144,482Professional Fundraising Fees $5,236