PFIC Network, Inc.
PFIC Community Call
PFIC Community Calls through January will be hosted by the PFIC Network as a place for members of the community to connect and ask questions. These calls are open to PFIC community members. Topic: PFIC Community Call Time: Jan 29, 2021 05:00 PM Eastern Time (US and Canada) Join Zoom Meeting https://zoom.us/j/7275588969 Meeting ID: 727 […]
Global Advisory Board
Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together, we hope that we can create solutions to fit all resource gaps.
Board Of Directors Meeting
Monthly meetings of governance and direction for our organization. These meetings are for members of the Board of Directors, all other attendees are by invite only.
FDA Listening Session
An FDA Listening Session is an opportunity for those who experience a disease (such as PFIC) as a patient of caregiver to speak to the FDA. This allows the FDA the opportunity to understand the desperate need for further treatments to be developed. Listening sessions are used as a resource for these regulators to engage […]
Patient & Parent Advisory Board
Monthly meetings for our patient and caregiver community to share feedback, resources and present new ideas to improve the quality of life of the PFIC Community.
Global Advisory Board
Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together, we hope that we can create solutions to fit all resource gaps.
Virtual Family Conference
Thanks to the ALGSA and MyCityMed, PFIC will be co-hosting a 2021 virtual family conference. There will be ways to learn more about PFIC and what's new in the research of PFIC, opportunities to learn more about how you can advocate PFIC, and ways to interact with other patients, families, doctors, scientists and industry professionals. […]
Impact of NICE Decision on PFIC Patients
There has been a lot of talk around the recent NICE decision to not recommend reimbursement of odevixibat for treatment of patients with PFIC in the UK, England and Wales. PFIC Network has been working with other advocacy organizations, PFIC Specialists and Albireo to understand what this means for patients in the UK and abroad. […]
Global Advisory Board
Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together, we hope that we can create solutions to fit all resource gaps.
Global Advisory Board
Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together, we hope that we can create solutions to fit all resource gaps.
2022 Scientific Conference
Pittsburgh, PA 1111 Airport Boulevard, Pittsburgh, Pennsylvania, United States, 15231, Pittsburgh, PA, United StatesThe PFIC Network will be hosting a scientific meeting for researchers, patients, providers and industry partners on April 29-30 in Pittsburg, Pennsylvania. This will be a hybrid meeting with opportunities to present research both in person and virtual. Important Dates: Abstract submission deadline: January 21, 2020 Final decision on presentations: January 28, 2020 Submit abstract: […]