Progressive Familial Intrahepatic Cholestasis Advocacy & Resource Network
Review Research Consortium Governance Charter Outline
Help us build a patient-centered research consortium for PFIC, a rare liver disease
Posted April 3, 2026
Background & Context
We are in the process of building a patient-centered research consortium that will bring together patients, caregivers, clinicians, and researchers as equal partners to advance comparative treatment research. PFIC Network is the legal entity behind the consortium and retains final approval authority over research projects through its Board of Directors, while a Steering Committee will handle day-to-day governance and research prioritization. The governance outline we've developed is a structured working document — not a finalized contract — that the Steering Committee will use to reach agreement on content before any formal legal document is produced.
Work & Deliverables
We are looking for an attorney to review an eight-page working outline of a governance charter for a newly forming research consortium and provide feedback (flag any major gaps or loopholes, advise on what additional elements will need to be addressed before a formal document is produced, etc).
We would also ask the attorney to review our organization's existing board bylaws to confirm they are compatible with the proposed consortium structure, and — if possible — share any guidance, examples, or resources related to study- or trial-specific partnership agreements with research institutions, to help us anticipate what we'll need to negotiate at that stage.
Progressive Familial Intrahepatic Cholestasis Advocacy & Resource Network
Our mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis (PFIC). PFIC Network was founded in 2018 by 3 mothers of PFIC patients. We strive to equip patients and families with the educational and support resources they need to navigate life with a devastating disease, create a sense of community & hope for those affected by PFIC, and to support research that will one day lead to a cure. While PFIC Network is based in the United States, we serve a global population and provide resources for patients and families all over the world.
Progressive Familial Intrahepatic Cholestasis Advocacy & Resource Network
Our mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis (PFIC). PFIC Network was founded in 2018 by 3 mothers of PFIC patients. We strive to equip patients and families with the educational and support resources they need to navigate life with a devastating disease, create a sense of community & hope for those affected by PFIC, and to support research that will one day lead to a cure. While PFIC Network is based in the United States, we serve a global population and provide resources for patients and families all over the world.