Progressive Familial Intrahepatic Cholestasis

What it reported doing in 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.

Financial Efficiency

• Mission deployment rate: 55.2%; rating input score 55
• Program expense ratio: 72.6%; rating input score 73
• Fundraising efficiency: $14.53 raised per $1 spent on fundraising; rating input score 46; 46th percentile among comparable filings

Transparency & Controls

• Consistency checks: 93.3%; rating input score 93; 24th percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: 0 of 8 controls in place; rating input score 0
  • Claims monitoring procedures: Fail
  • Requires narrative reports: Fail
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Fail
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• Grant itemization coverage: 100%; rating input score 100; 78th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 75%; rating input score 75; 19th percentile among comparable filings
• Governance controls: 8 of 9 controls in place; rating input score 89
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Fail
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 24%; rating input score 77; 77th percentile among comparable filings
• Total-asset coverage ratio: 0.87; rating input score 39; 39th percentile among comparable filings
• Liabilities to assets ratio: 0.24; rating input score 23; 23rd percentile among comparable filings
• Officer compensation ratio: 14.7%; rating input score 25; 25th percentile among comparable filings

Growth

• Program expense growth: 12.8% per year; rating input score 100; 66th percentile among comparable filings
• Revenue growth: 16.1% per year; rating input score 100; 76th percentile among comparable filings
• Asset growth: 10.6% per year; rating input score 100; 57th percentile among comparable filings