The PFIC Newsroom

Every story we have to tell brings us one step closer to finding more treatment options for PFIC. Whether we are raising disease awareness, advocating for our families, inspiring hope or coming together at an event, PFIC families are working tirelessly to make themselves known. The PFIC Newsroom page highlights stories that have been published outside of the PFIC Network. If you have been in the news or media and would like your story to be featured on this page, please contact us.

Note: PFIC Newsroom stories are not endorsements or prescriptions of any treatment either available or in development. If you are interested in learning more about if treatment options are the right choice for you or your child, please discuss with your doctor.

Advocacy
Rare and Complex Liver Transplant by Indian Surgeons, 9-month-old Baby From Iraq Gets a New Life
March 2, 2021

A heartfelt story about a rare and complex surgery for PFIC at HCMCT Manipal Hospitals Delhi

Advocacy
Randi Rering, now 18, has battled and survived a rare liver disease and wants to help others
April 20, 2020

Rare liver disease survivor want to help and encourage others.

Advocacy
10-year-old girl becomes the face of hope for people living with rare liver disease
November 23, 2019

Rare liver disease support and encouragement comes from a 10-year-old girl.

Advocacy
Living with a rare disease: St. Catharines family finds support in advocacy network
November 21, 2019

The rare disease community finds support from the PFIC Network.

Article
Boy’s rare disease causes constant itching, will harm his liver
September 20, 2019

Boy’s rare disease causes constant itching.

Family Confernece
How One Rare Disease Organization Boosted Another
July 11, 2019

How rare disease organization & advocacy networks can work as a team to bring patient communities together.