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!
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 over future plans we have in the works for the upcoming calendar year.
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 EVENT Friday, November 12, 2021 - 8:00 am - Tuesday, November 16, 2021 - 3:00 pm LOCATION Anaheim, CaliforniaUnited States
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 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 call for December is themed around the holidays! Click the link below to join. https://www.pfic.org/pfic-community-zoom-room/
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 in unity to show that just because you have a rare disease, does not mean you are alone.
International Alliance Meetings
Formerly known as the Global Advisory Council. We invite you to join us at the International Alliance meeting. This is a space for addressing PFIC resource needs as well as advocacy and policy issues in participating countries. Because of time zone differences across the globe we will be having two different meetings for people to […]