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.
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 each with a theme that is of interest to members of our community. Please join us as we support each other through the devastations and […]
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 flagship congress, is delivered to you on our online learning platform, EASL Campus. ILC 2021 is all about beating liver disease together. We will tackle this challenge from multiple […]
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. […]
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 all been through/are going through PFIC and understand what it is like to be a kid who is itchy, who has had multiple hospitalizations, who […]
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 us! Information taken from website: Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, […]
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.
Kids Club Community Call
Join in on the Kids Club Community call starting at 4 PM EST!