PFIC | Events

The PFIC Family Conference was the first ever opportunity for PFIC families worldwide to get together at one event. 22 PFIC Families joined together with clinicians, researchers and industry professionals to learn more and meet others who experience PFIC. Thank you to all who traveled to attend, the weekend was extremely special!

Children’s Hospital Colorado will hosted this webinar to provide an overview for patients and families. They went over what to expect throughout the journey of PFIC- from a new diagnosis, to exploring treatment and management options including nutrition management, medication/ surgical management, and clinical trial considerations, all the way through to when/if to expect the discussion of liver transplant. Moderated by Executive Director, Emily Ventura, RN.

Session 1 Medical and Surgical Options Video Part 1

A brief background about PFIC and the medical management options including nutrition, medications, and medications in clinical trials. Presented by Dr. Jim Squires of Children’s Hospital of Pittsburgh. Question and Answer session at the end moderated by Executive Director, Emily Ventura, RN.

Session 1 Medical and Surgical Options Video Part 2

A closer look at current surgical treatment options including PEBD, internal diversion and Liver Transplant. Presented by Dr. Kyle Soltys of Children’s Hospital of Pittsburgh. Question and Answer session at the end moderated by Executive Director, Emily Ventura, RN.

Session 2 Transplant Life and Complications Video Part 1

A closer look at what to expect when receiving a Liver Transplant, and how life changes after. Presented by Dr. Jim Squires of Children’s Hospital of Pittsburgh. Question and Answer session at the end moderated by Executive Director, Emily Ventura, RN.

Session 2, Specific Complications of Transplant

Diving deep into unique aspects of PFIC, this webinar focuses on some of the considerations that PFIC 1 & 2 patients may experience post transplant. Presented by Dr. Kyle Soltys of Children’s Hospital of Pittsburgh. Question and Answer session at the end moderated by Executive Director, Emily Ventura, RN.

Join the PFIC Network and our host, Richard Thompson, Professor of Molecular Hepatology at the Institute for Liver Studies, Kings College London and Consultant Pediatric Hepatologist, at King’s College Hospital. He will discuss the seemingly complex topic of the Genetics of PFIC including the various subtypes and why they are each so unique. He will also dive into some of the barriers behind genetic testing and why the disease is so difficult to treat. He will then give us a quick look at what has been recently discovered in the genetics of PFIC. Moderated by Executive Director, Emily Ventura, RN. Head over to our genetics page to learn more.

From a fairytale family to losing three brothers, maternal advocate Cristol Barrett O’Loughlin draws on personal tragedy to ease the suffering hearts of others. Her inspiring stories of courageous #RareMothers, reveal the secrets to sustainable self-care and wellness. Forget “PTSD” — more accurate is “CTSD” (Chronic Traumatic Stress) — as our rare community grapples with the realities of long-term caregiving and disease management. There is a purpose to our pain. With guided meditations and her signature infectious enthusiasm, Cristol gently nudges us all to move beyond “Why me?” into “What can I do to help others and to help myself? Moderated by President, Melanie Karakaidos.