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.
Project REACH Across the Globe
This July, PFIC Network was honored to receive a Global Genes Health Equity in RARE Patient Impact grant to address challenges affecting underserved patient communities.
PFIC Scientific Conference: Wrap-Up and Next Steps
The PFIC Scientific Conference Held Many Great Presentations and Roundtables That Informed Both The Scientific And Patient Communities.
Research Announcement: The PFIC Network Research Grant Program is Now Open
Thanks to Our Amazing Community, the PFIC Network Has Been Able to Follow Through with Scientific and Research Priorities to Start the PFIC Network Research Grant Program by the End of the Year.
Cincinnati Children’s Launches Research Center for Rare Liver Diseases
Cincinnati Children’s Hospital is investing in research of cholestatic liver diseases such as PFIC.
CZI Awards $13 Million to Patient-Led Organizations Advancing Rare Disease Research
PFIC Network has partnered to work as a patient led collaborative research network, being experts on our own disease, to facilitate research programs for PFIC.
Bespoke Gene Therapy Consortium to Fund Research into Improving Standardizing Methods for Preclinical Testing of Gene Therapies.
The NIH, FDA, and FIH have unveiled a public-private partnership aimed at accelerating gene therapies for the roughly 30 million Americans living with a rare genetic disease.
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.