Resources
Learn more about PFIC and other rare liver diseases.
PFIC resources
While ongoing research seeks better treatment options for people with progressive familial intrahepatic cholestasis, these resources offer support for patients and families.*
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PFIC Guide to Talking With Your Doctor
Developed in partnership with the PFIC Network and other people living with PFIC. Download the FREE PFIC Guide to Talking with Your Doctor and learn:
- Why it’s important to prepare for medical appointments
- The value of advocating for yourself and others
- Questions other families living with PFIC ask their doctors
PFIC Fact Sheet
PFIC Voices developed the PFIC Fact Sheet as a concise tool to share information on PFIC types, signs and symptoms, diagnosis, and the burden of this disease on patients and their families.
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American Liver Foundation (ALF) is a national, voluntary nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy.
LiverFoundation.org
Childhood Liver Disease Research Network (ChiLDReN) offers medical and patient advocacy support with clinical sites and research labs in the U.S.
Childrennetwork.org
Children’s Liver Disease Foundation (CLDF) is a UK-based charity dedicated to pediatric liver diseases. Download the CLDF PFIC brochure here: https://www.childliverdisease.org/wp-content/uploads/2018/01/PFIC.pdf.
Childliverdisease.org
ClinicalTrials.gov provides the public with information on clinical studies on a wide range of diseases and conditions, including PFIC.
Clinicaltrials.gov
Global Genes is an advocacy organization committed to supporting the rare disease community.
GlobalGenes.org
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. It is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
www.rarediseases.org
Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network (PFIC Network) aims to improve the lives of patients and families worldwide affected by PFIC.
PFIC.org
*PFIC Voices and Albireo are not responsible for content provided by third-party resources and websites listed here.
