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.
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.