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.
FDA Approval of Bylvay (Odevixibat) for the treatment of Progressive Familial Intrahepatic Cholestasis
We are excited to hear that the FDA has approved Bylvay (Odevixibat) for the treatment of Progressive Familial Intrahepatic Cholestasis.
European Commission Approval of Bylvay (Odevixibat) for the treatment of Progressive Familial Intrahepatic Cholestasis
We are excited to hear that the EMA has approved Bylvay (Odevixibat) for the treatment of Progressive Familial Intrahepatic Cholestasis.
Rare and Complex Liver Transplant by Indian Surgeons, 9-month-old Baby From Iraq Gets a New Life
A heartfelt story about a rare and complex surgery for PFIC at HCMCT Manipal Hospitals Delhi
Randi Rering, now 18, has battled and survived a rare liver disease and wants to help others
Rare liver disease survivor want to help and encourage others.
10-year-old girl becomes the face of hope for people living with rare liver disease
Rare liver disease support and encouragement comes from a 10-year-old girl.
Living with a rare disease: St. Catharines family finds support in advocacy network
The rare disease community finds support from the PFIC Network.
Boy’s rare disease causes constant itching, will harm his liver
Boy’s rare disease causes constant itching.
Local child fights rare genetic disorder, family working to raise awareness
Rare genetic disease, PFIC.
The First-Ever PFIC Network Family Conference will Bring Families Affected by the Disease Together This Week
PFIC Network Family conference.
How One Rare Disease Organization Boosted Another
How rare disease organization & advocacy networks can work as a team to bring patient communities together.