Board Of Directors Meeting
2021-02-08 20:00 - 21:30 UTC
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.

Global Advisory Board
2021-02-06 00:00 UTC
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.

PFIC Community Call
2021-01-05 17:00 - 18:00 (America/New_York)
PFIC Community Calls through January will be hosted by the PFIC Network as a place for members of the community to connect and ask questions. These calls are open to PFIC community members.
Topic: PFIC Community Call
Time: Jan 29, 2021 05:00 PM Eastern Time (US and Canada)
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https://zoom.us/j/7275588969
Meeting ID: 727 558 8969
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Meeting ID: 727 558 8969
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PFIC 101
2020-12-08 19:30 - 21:00 UTC

Patient/Parent Advisory Board Meeting
2020-11-19 19:30 - 20:30 UTC

WEBINAR: Mental Health-Coping Strategies for the Patient and Caregiver
2020-11-10 19:00 - 20:00 UTC

WEBINAR Genetics of PFIC
2020-11-07 16:00 - 17:00 UTC

Understanding the Drug Development Process
2020-10-19 19:30 - 20:30 UTC

Registries
2020-10-17 11:00 - 12:00 UTC

How To Tell Your Story
2020-10-10 18:00 - 19:30 UTC

Update from Albireo: Odevixibat
2020-10-02 20:00 - 20:30 UTC

Update from Mirum: Maralixibat
2020-10-02 19:30 - 20:00 UTC

Ambassador Hour-Global
2020-10-02 02:00 - 03:00 UTC

Ambassador Hour-Americas
2020-10-01 19:30 - 20:30 UTC

WEBINAR Transplant: Life After
2020-09-29 15:00 - 16:00 UTC

WEBINAR Transplant: Complications of by subtype
2020-09-29 14:00 - 15:00 UTC

WEBINAR Surgical Management of PFIC: Diversions and Transplant
2020-09-28 15:00 - 16:00 UTC

WEBINAR Medical Management of PFIC: Nutrition and Medications
2020-09-28 14:00 - 15:00 UTC

PFIC Awareness Day 2019
2019-10-05
Inspired by our children and brought to life by our board members, this day is dedicated to igniting a fire in our community and bringing awareness to the debilitating itch that PFIC has on our children, our families and our lives.
On October 5, 2019 the PFIC Advocacy and Resource Network inspired the first annual PFIC Awareness Day. On this day, members of our community hosted individual fundraisers and awareness efforts in their own personal communities. In collaboration with Life Gave Lemons, the PFIC Network provided toolkits to the first 25 members of our community who expressed interest in hosting a fundraiser. Toolkits included stickers, bracelets, pens and information on how to create your own personal awareness day. Those who did not host fundraisers still were involved in spreading awareness on social media by introducing themselves and their PFIC story with the #pficawareness and #stoptheitch. We look forward to building on this day next year as we plan for the second PFIC Awareness Day!

2019 Family Conference
2019-06-21 08:00 - 2019-06-25 17:00 UTC | Cincinnati, Ohio, Cincinnati, Ohio, USA
The PFIC Family Conference was the first ever opportunity for PFIC families worldwide to get together at one event. Thank you to all who traveled to attend, the weekend was extremely special!
This conference was made possible by the extreme generosity of the Allagille’s Syndrome Alliance who allowed us to join in their weekend. Also, a very special thank you to our Presenting Sponsor, Albireo Pharma and our supporting sponsor, Mirum Pharmaceuticals. Their support enabled 22 families struggling with PFIC to join together in one place.
