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.
Help Fight Gigi’s Battle: Dover teacher looking for answers to solve toddler daughter’s rare liver condition.
“At first glance, one-year-old Giovanna “Gigi” Iachetta is a bubbly toddler with a radiant smile. But behind the giggles is a fierce little fighter living with Progressive Familial Intrahepatic Cholestasis (PFIC), a rare, incurable genetic liver disease affecting one in 100,000 children.”
Check out Gigi’s news story by Mariana Simioni on Dovernow.com!
2025 PFIC Charity Open & Labor Day Party
Local News Highlights PFIC Charity Disc Golf Event
A local news station recently featured coverage of the 3rd Annual PFIC Charity Open & Labor Day Party, held on September 1 in Campton, Kentucky. The event brought together disc golfers, cornhole players, and community members for a fun-filled day of competition, music, and celebration. In addition to raising critical funds for families affected by PFIC,the event also helped raise awareness — sharing our story with an even wider audience. We’re grateful for the continued support of our Red River Gorge community and proud to see our cause highlighted in the local news!
Their son has a rare disease: these parents want to raise awareness about the importance of organ donation
Their little one’s case will one day require a liver transplant. Read the full story in Le Journal de Quebec!
“Itching and Scratching”, a Liver Disease News column about PFIC
Sophie Bourton is symptomatic carrier for progressive familial intrahepatic cholestasis and mother to a child with PFIC. Check out her column “Itching and Scratching” on Liver Disease News about the ups and downs of life in a family affected by PFIC.
New drug access for PFIC patients in Japan!
Exciting news for PFIC and Alagille syndrome patients in Japan! Maralixibat was recently approved by the Japanese Ministry of Health, Labour, and Welfare for the treatment of cholestatic pruritus. Congratulations to the Mirum Pharmaceuticals team!
Project IMPACT enters its second year!
We are excited to be halfway through our two year project, IMPACT! IMPACT is an acronym that stands for: “Identifying research targets by Merging Patient And Clinician Treatment information.” The goal of the project is to prepare the PFIC community for patient-centered outcomes research by July 2025.
This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
Check out our 1 Year Anniversary blog post to find out about all the progress we’ve made!
Expanded label for maralixibat!
Exciting news for young PFIC patients in the United States! The U.S. Food and Drug Administration has approved a label expansion for maralixibat. The expanded label includes use in PFIC patients 12 months and older as well as the higher concentration formulation evaluated in the MARCH Phase 3 study. Congratulations to the Mirum Pharmaceuticals team 
Exciting news for PFIC patients in Europe!
Exciting new for PFIC patients in Europe! The European Commission has granted marketing authorization for maralixibat for the treatment of progressive familial intrahepatic cholestasis in patients three months of age and older.
FDA Approval of LIVMARLI (maralixibat) for the treatment of cholestatic pruritus in PFIC
Congratulations to the Mirum Pharmaceuticals team! Yesterday they received FDA approval for LIVMARLI as a treatment for cholestatic pruritus associated with PFIC. We are so excited for PFIC patients in the US to have another tool in their toolbox to fight back against the terrible itch of pruritus. A big thank you to the Mirum team for their hard work & vision and to all the clinical trial participants who made this day possible!
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.