2023-10-16T10:40:10-04:00 2022-12-31 474306215 Mullins PC 7625 Wisconsin Avenue Bethesda MD 20814 990 2022-01-01 831084501 Progressive Familial Intrahepatic Cholestasis PROG PO Box 551 Stanton KY 40380 Emily Ventura Co-Founder Exe 4143313316 2023-10-13 true Emily Ventura XXX-XX-XXXX John Mullins P01429307 2027706371 2023-10-16 0 00 AAL1 IAL1 2022 2023-04-26 12:10:37Z contd Advocacy and Resource Ne Emily Ventura 270986 false X www.pfic.org X 2018 KY To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. 5 5 4 30 0 0 808129 266086 0 0 626 4900 808755 270986 10554 30000 0 90976 207520 0 55418 133674 289528 235204 527048 573551 -256062 718340 487255 25852 50829 692488 436426 To improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. false false 373496 30000 In 2022, 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. Through our peer support program, we launched monthly Zoom support groups led by a facilitator and began offering 1:1 Zoom coaching sessions for families that need additional support. We continue to offer financial assistance and care packages to PFIC patients and families in need. A major initiative for our advocacy program was hosting the International Alliance series of virtual meetings. These meetings gather international patient leaders to discuss their country-specific issues and collaborate on shared solutions. This led to the development of a partnership with PFIC Italia to expand our financial assistance program to international recipients starting in January 2023. Through our outreach, advocacy and education programs, we launched the inaugural session of Project REACH (Research, Education, Advocacy, Collaboration, and Hope), a virtual workshop series and needs assessment in India and Pakistan to help create an advocacy action plan for local patient leaders, educate patients about available resources and build relationships between patients and providers in these underserved countries. Project REACH was supported by a RARE Impact Grant from Global Genes. 2022 was a significant year for our research program. We hosted our first science-focused conference, bringing 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. It was a hybrid meeting with 60 in-person and 25 virtual participants from all over the world. We relaunched our patient registry in April 2022 on a new platform (REDCap) that improves the quality of the data collected, allows us to collect longitudinal data and gives us better ownership and control of our registry data. We also began a major translation project that will allow us to offer the registry in Italian, Spanish and Polish in 2023. We disbursed the first $30,000 PFIC Network Annual Small Grant towards PFIC research and announced another round of that funding opportunity that will accept applications in 2023. 373496 true true false false false false false false false false false false false false true true false false false false false false false false 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 4 true false false false false false false false false false false false false X 5 5 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 Directo 10.00 0.00 X X 71000 0 0 Charmaine Gravener Director 1.00 0.00 X 0 0 0 Erin Hovey Secretary 2.00 0.00 X X 0 0 0 Hayley Watts Treasurer 2.00 0.00 X 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 71000 0 0 0 false false false 266086 266086 4900 4900 4900 270986 4900 0 0 X 30000 30000 71000 37097 22550 11353 118073 61691 37501 18881 3000 1567 953 480 15447 8071 4906 2470 3720 580 3140 6425 6425 132933 98491 16540 17902 43609 42825 559 225 8167 2753 4447 967 71321 69470 1851 1822 1822 Royalty and Licensing 21531 21531 527048 373496 98134 55418 318319 280906 400000 206349 21 718340 487255 25852 50829 25852 50829 X 92488 83908 600000 352518 692488 436426 718340 487255 -256062 0 X false true X true false X 130613 118590 808129 266086 1323418 130613 118590 808129 266086 1323418 1002956 320462 9086 626 4900 14612 1338030 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED X 270986 270986 270986 527048 527048 527048 Footnote for uncertain tax position under FIN 48 (Part X) 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. 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 $132,933