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- What is PFIC?
- Adult Diagnosis & Transition to Adult Care
- Educational PFIC Webinar Series
- (2024) Assessment & Communication of Risk in Gene Therapy
- (2024) Current and Emerging PFIC Treatment Landscape
- (2024) Current Prognosis and Prospects of Liver Transplant
- (2024) Future Treatments of PFIC
- (2024) Patient-Centered Outcomes & the PN Patient Registry
- (2024) PFIC in Adults: Diagnosis & Onset
- (2024) Pre-Transplant PFIC Diet & Nutrition
- (2024) Project IMPACT Updates
- (2024) Research Workshop Summary & Conference Closing Remarks
- (2026) Erin’s Story
- (2026) PFIC Research Advancements Part 1
- (2026) PFIC Research Advancements Part 2
- (2026) PFIC Research Consortium Project
- Basics of PFIC Genetics Webinar
- Considerations Related to Covid & PFIC
- Considering the Role of Stress in Pruritus
- Evidence-Based Interventions for Chronic Itch Webinar
- Genetics of PFIC and Its Subtypes
- Genetics of PFIC by Subtype
- Liver Transplant Life and Complications Part 1
- Medical and Surgical Options Video Part 1
- Mental Health: Coping Strategies for the Patient & Caregiver
- PFIC 101
- PFIC 101 For Kids: An Easy to Understand Overview
- PFIC Medical and Surgical Treatment Options Part 2
- PFIC Specific Complications of Transplant
- Thinking About Thinking Webinar
- Tips for Finding a Therapist Webinar
- Tips for Managing Stress Webinar
- Genetics of PFIC
- Liver Disease Basics
- PFIC Diagnosis
- PFIC Network Educational Brochure
- Possible PFIC Treatments
- The Itch
- Types of PFIC
Posts by category
- Category: Advocacy
- Benefits & Risks of PFIC Clinical Trials
- An International PFIC Alliance: One world, one mission.
- A Gap in Poland and What the Community Can Do
- PFIC Awareness Day 2025: A message to our community
- Celebrating One Year of Project IMPACT!
- ESPGHAN 2024 Recap
- Reflecting On Our Journey & Preparing For Our Future
- International Alliance Update: February 2024
- Empowering Young Advocates Part 2:
- Empowering Young Advocates: How to Advocate for Yourself as a Child or Teenager with PFIC
- 6 Ways to Advocate for Yourself as a PFIC Patient or Parent – And Why It Matters
- Sophie’s Success Fundraising
- PFIC International Alliance in Action: A Special Trip to ESPGHAN!
- Today We Celebrate Rare Disease Day
- Project REACH Across the Globe
- Advocacy in Action – PGT-M Acceptance Through Experience
- Reflection: Takeaways from our Booth at the ESPGHAN Congress
- A Natural Advocate
- Advocacy – A Mothers Voice
- Julia
- The itch won…
- My PFIC 2 child, all grown up & speaking up
- Category: Blog
- Making Sense of a PFIC-Related Diagnosis as an Adult
- First research paper covering the PFIC Network Patient Registry published
- Understanding PFIC Naming:
- Pruritus Resources
- Trey’s Transplant Story
- Why The PFIC Network Patient Registry Matters
- PFIC Awareness Day 2024: A message to our community
- It’s Okay To Feel This Way:
- 2024 Conference Summary Report
- Rare Siblings
- ?Research Updates from the ChiLDReN Network
- Deciding In The Dark
- Perspectives: Coping with Self-Doubt
- Exploring Insomnia
- Category: Events
- Category: Itch
- Category: Mental Health Support
- Category: News & Announcements
- Category: Patient Stories
- Category: Science & Research
- Category: Support & Resources
Products
- Limited Edition PFIC Itching For A Cure Women’s Tank Top
- Black PFIC Network Hooded Sweatshirt
- Black PFIC Network T-shirt
- Fundraising Swag Bag
- PFIC Awareness Wristband Bracelet
- Educational Brochure - Printed Version
- Educational Brochure - Digital Download
- 2021 PFIC Network T-shirt
- PFIC Network Square Sticker
- PFIC Network Logo Sticker Round
- PFIC Network Pen
- PFIC Keychain
- 2020 PFIC Awareness Day Onesie
- 2020 PFIC Awareness Day Youth/Toddler T-Shirt
- 2020 PFIC Awareness Day Logo T-shirt
- Talk to your Doctor Brochure
Newsroom
- Scoop of Comfort: Toddler with rare liver disorder inspires ice cream fundraiser for support foundation
- Results of IMPACT Published in Peer-Reviewed Journal
- Severe itching in PFIC children disrupts sleep, family life: Registry analysis
- New PFIC Network PCORI Engagement Award
- Help Fight Gigi’s Battle: Dover teacher looking for answers to solve toddler daughter’s rare liver condition.
- 2025 PFIC Charity Open & Labor Day Party
- Their son has a rare disease: these parents want to raise awareness about the importance of organ donation
- "Itching and Scratching", a Liver Disease News column about PFIC
- New drug access for PFIC patients in Japan!
- Project IMPACT enters its second year!
- Expanded label for maralixibat!
- Exciting news for PFIC patients in Europe!
- FDA Approval of LIVMARLI (maralixibat) for the treatment of cholestatic pruritus in PFIC
- Project REACH Across the Globe
- PFIC Scientific Conference: Wrap-Up and Next Steps
- Research Announcement: The PFIC Network Research Grant Program is Now Open
- Cincinnati Children’s Launches Research Center for Rare Liver Diseases
- CZI Awards $13 Million to Patient-Led Organizations Advancing Rare Disease Research
- Bespoke Gene Therapy Consortium to Fund Research into Improving Standardizing Methods for Preclinical Testing of Gene Therapies.
- FDA Approval of Bylvay (Odevixibat) for the treatment of Progressive Familial Intrahepatic Cholestasis
- European Commission Approval of 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
- Randi Rering, now 18, has battled and survived a rare liver disease and wants to help others
- 10-year-old girl becomes the face of hope for people living with rare liver disease
- Living with a rare disease: St. Catharines family finds support in advocacy network
- Boy’s rare disease causes constant itching, will harm his liver
- Local child fights rare genetic disorder, family working to raise awareness
- The First-Ever PFIC Network Family Conference will Bring Families Affected by the Disease Together This Week
- How One Rare Disease Organization Boosted Another
Network Library
- Nutritional Management of PFIC
- Genetic Cholestasis in Adults: Making Sense of a PFIC-Related Diagnosis
- Genetics of PFIC: Current Status and Implications
- Systematic Review of Progressive Familial Intrahepatic Cholestasis
- Genotype Correlates with the Natural History of Severe Bile Salt Export Pump Deficiency
- Newer Approaches to the Management of Pruritus in Cholestatic Liver Disease
- Expanding etiology of progressive familial intrahepatic cholestasis
- Outcomes of Surgical Management of Familial Intrahepatic Cholestasis 1 and 2
- Bile Salt Export Pump-Reactive Antibodies Form a Polyclonal, Multi-Inhibitory Response in Antibody-Induced Bile Salt Export Pump Deficiency