Rare Disease Day
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. Rare disease day brings people with all rare diseases together in unity to show that just because you have a rare disease, does not mean you are alone.
International Alliance Meetings
Formerly known as the Global Advisory Council. We invite you to join us at the International Alliance meeting. This is a space for addressing PFIC resource needs as well as advocacy and policy issues in participating countries. Because of time zone differences across the globe we will be having two different meetings for people to […]
2022 Scientific Conference
Pittsburgh, PA 1111 Airport Boulevard, Pittsburgh, Pennsylvania, United States, 15231, Pittsburgh, PA, United StatesThe PFIC Network will be hosting a scientific meeting for researchers, patients, providers and industry partners on April 29-30 in Pittsburg, Pennsylvania. This will be a hybrid meeting with opportunities to present research both in person and virtual. Important Dates: Abstract submission deadline: January 21, 2020 Final decision on presentations: January 28, 2020 Submit abstract: […]
Kids Club Community Call (Moved from the 21st)
Join a community call for the kids! This is a time for PFIC kids to get together and talk about anything and everything, play games, and have fun in the PFIC Community.
International Alliance Meetings
Formerly known as the Global Advisory Council. We invite you to join us at the International Alliance meeting. This is a space for addressing PFIC resource needs as well as advocacy and policy issues in participating countries. Because of time zone differences across the globe we will be having two different meetings for people to […]
Project REACH – Pakistan
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, […]
Project REACH – India
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, […]
Project REACH – Pakistan
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, […]
Mental Health Support Session
What the support group is about - The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another, share their experiences, and offer one another support. Why it's important - Parenting a child with a rare disease can be exhausting, overwhelming, and isolating. It's important to have […]
Project REACH – India
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, […]
Project REACH – Pakistan
Project REACH (Research, Education, Advocacy, Collaboration, and Hope), an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. This project consists of a three-part workshop series leveraging interpretation services, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September, […]
Grandparents & Non-Caregiver Support Group
Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group, though. If you are a non-caregiving relative or close friend of a PFIC patient, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind, but all […]