The PFIC Network is a community-led and community driven organization. All of our programs and initiatives are born out of the minds and hearts of passionate PFIC patients, families, and caregivers. Pave the way towards a cure with us by participating on one of our advisory committees:
Community Advisory Council
The PFIC Network Community Advisory Council (CAC) is a group of volunteers who are dedicated to helping the PFIC Network stay in touch with the needs of the community.
During meetings, members:
- Express their personal struggles with PFIC and related diseases to find solutions and support with the PFIC Network.
- Provide feedback to help inform and build PFIC Network programs.
- Collaborate on projects with other community members (e.g. Rare Disease Day theme, Scientific Conference Roundtable themes, brochures, etc.).
The Community Advisory Council meets via Zoom on the first Thursday of each month at 7:30pm.
International PFIC Research & Registry Review Committee (IRRRC)
Excited to participate in the direct facilitation of PFIC research? Join the IRRRC!
PFIC Network’s International PFIC Research & Registry Review Committee consists of patient-community members from around the world who are tasked with reviewing scientific collaboration requests and research proposals involving the PFIC Network Patient Registry.
IRRRC members are also responsible for:
- Designing and defining the patient registry to produce meaningful data that truly represents the PFIC community’s needs, and
- Reviewing proposals in response to our own Funding Opportunities (research grants).
Community members who choose to be seated on the IRRRC will receive training from PFIC Network to review proposals in an unbiased way according to pre-established criteria (e.g. benefits and burden for the PFIC community).
If you are a PFIC patient or caregiver and would like to participate in the IRRRC, please contact email@example.com.