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. […]
Kids Club Community Call
Join in on the Kids Club Community call starting at 4 PM EST!
PFIC Network State of the Union Address
The Board of Directors will be hosting a Facebook Live event to update the community on PFIC Network events, organization updates and milestones we have accomplished. We will also go […]
AASLD The Liver Meeting 2021
The PFIC Network will be registering to attend the AASLD Liver Meeting, 2021. Patients and affiliates are encouraged to sign up to learn more! More details on website: DATE OF […]
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. […]
Kids Club Community Call
Join in on the PFIC Kids Club community call with your PFIC Kid! It is a ton of fun for the kids as they learn they are not alone. The […]
Rare Disease Day
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Rare disease day brings people with all rare diseases together […]