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Posts by category
- Category: Blog
- PFIC Scientific Conference: Wrap-Up and Next Steps
- Story Sunday – Sophie & Eva – A Positive Outlook
- Story Sunday – Financial Assistance and Transplant – Smith Family
- Story Sunday: Adult Patient – Shawn
- Story Sunday: Diagnosis – Lisa & Cadence
- Patients Supporting Research in PFIC
- Research Announcement: The PFIC Network Research Grant Program is Now Open
- A Natural Advocate
- Advocacy – A Mothers Voice
- NICE makes decision to not recommend reimbursement-Community Action Needed
- Julia
- The itch won…
- My PFIC 2 child, all grown up & speaking up
- The Importance of the Patient Registry
Products
- Itching for A Cure Bear
- Black PFIC Network Sweatshirt
- Black PFIC Network T-shirt
- Fundraising Toolkit
- PFIC Network Bracelet
- Educational Brochure - Printed Version
- Educational Brochure - Digital Download
- Family Conference Swag Bag
- 2021 PFIC Network T-shirt
- Special Thanks!
- PFIC Awareness Coffee Mug
- Care Package for Child
- PFIC Sticker Square
- PFIC Sticker Round
- PFIC Pen
- PFIC Keychain
- PFIC Awareness Onesie
- PFIC Awareness T-Shirt Toddler
- Talk to your Doctor Brochure
- Care Package for Teen or Adult Patient
- Parent Care Package
Testimonials
- Emily Knakmuhs, mother of Kennedie
- Jacqueline, 30yrs BRIC
- Sara Harris, mom of Alaia, PFIC 2
- A PFIC Mom from India
- Madison Selmani, PFIC patient
Families
- Eva Wren's Story
- Smith Family
- Kennedie's Story
- Cedar's Story with PFIC 2
- Anna's Story with PFIC 2
- Sadia's Story with PFIC 2
- Eva Luna's Story with PFIC
- Cade's Ostomy Journey-A mother's Acceptance
- The diary of a PFIC mom from India
- Sophia's Story with BRIC - a long road to diagnosis
- Yolanda's Story with BRIC
- Armando's story with PFIC
Newsroom
- 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
- Years after diagnosis, Kentucky girl with rare disorder is meeting kids like her for first time
- How One Rare Disease Organization Boosted Another
- The First-Ever PFIC Network Family Conference will Bring Families Affected by the Disease Together This Week
- Local child fights rare genetic disorder, family working to raise awareness
- Boy's rare disease causes constant itching, will harm his liver
- Randi Rering, now 18, has battled and survived a rare liver disease and wants to help others
- 'Itch like crazy:' Edmonton boy battles ultra rare disease
- Living with a rare disease: St. Catharines family finds support in advocacy network
- 10-year-old girl becomes the face of hope for people living with rare liver disease
- Mom Is Tirelessly Raising Awareness About Her Daughter's Rare, Life-Threatening Disease
Volunteer
Network Library
- 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
Venues
Events
- Kids Club Community Call (Moved from the 21st)
- International Alliance Meetings
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- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Community Advisory Council Meeting
- Rare Disease Day
- Community Calls
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- Kids Club
- Kids Club
- Kids Club
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- Kids Club
- Kids Club
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- Board of Directors Meeting
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- Board of Directors Meeting
- Board of Directors Meeting
- 2022 Scientific Conference
- Kids Club Community Call
- PFIC Network State of the Union Address
- Kids Club Community Call
- Impact of NICE Decision on PFIC Patients
- Kids Club-Zoom Chat
- Community Call - June
- Global Genes Rare Patient Advocacy Summit
- AASLD The Liver Meeting 2021
- EASL International Liver Congress 2021
- Virtual Family Conference
- Global Advisory Board
- Global Advisory Board
- Global Advisory Board
- Global Advisory Board
- Global Advisory Board
- Global Advisory Board
- Patient & Parent Advisory Board
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- Board Of Directors Meeting
- PFIC Community Call
- PFIC Community Call
- PFIC Community Call
- PFIC Community Call
- PFIC Community Call
- FDA Listening Session
- PFIC 101
- WEBINAR: Mental Health-Coping Strategies for the Patient and Caregiver
- Patient/Parent Advisory Board Meeting
- Patient/Parent Advisory Board Meeting
- Understanding the Drug Development Process
- Update from Mirum: Maralixibat
- Update from Albireo: Odevixibat
- How To Tell Your Story
- Registries
- Ambassador Hour-Global
- Ambassador Hour-Americas
- WEBINAR Medical Management of PFIC: Nutrition and Medications
- WEBINAR Genetics of PFIC
- WEBINAR Transplant: Life After
- WEBINAR Transplant: Complications of by subtype
- WEBINAR Surgical Management of PFIC: Diversions and Transplant
- PFIC Awareness Day
- PFIC Awareness Day 2019
- 2019 Family Conference