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. […]
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 […]
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. […]
Community Call – June
PFIC Network seeks to provide a place for our patient and caregiver community to chat and support each other. Beginning in April, we will host a monthly zoom chat rooms […]
EASL International Liver Congress 2021
We will be attending the virtual event offered by EASL. Patients and affiliates are encouraged to join to learn more! Details taken from website: The International Liver Congress™ 2021, our […]
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 […]
Kids Club-Zoom Chat
This zoom chat is very special. It is a chat room hosted by kids with PFIC, for kids with PFIC. The hosts, Cade (17), Cadence (11) and Cedar (9), have […]
Global Genes Rare Patient Advocacy Summit
The PFIC Network will be registering for and attending the Global Genes Rare Patient Advocacy Summit. Patients, ambassadors and advocates are encourage to reach out to learn more and join […]
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. […]
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. […]