Events

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 […]

Recurring

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.

Recurring

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.

Recurring

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. […]

Recurring

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.

Recurring

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.

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. […]

Recurring

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.

Recurring

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. […]