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 […]
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, […]
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 […]
Patient Support Group Session
What the support group is about – The group offers a safe and welcoming space in which PFIC patients can connect with one another, share their experiences, and offer one another support. Why it’s important – Having a rare disease can be exhausting, overwhelming, and isolating. It’s important to have a space in which you feel seen, […]
Parent & Caregiver Support Group 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 […]
Patient Support Group Session
What the support group is about – The group offers a safe and welcoming space in which PFIC patients can connect with one another, share their experiences, and offer one another support. Why it’s important – Having a rare disease can be exhausting, overwhelming, and isolating. It’s important to have a space in which you feel seen, […]
Patient Support Group Session
What the support group is about – The group offers a safe and welcoming space in which PFIC patients can connect with one another, share their experiences, and offer one another support. Why it’s important – Having a rare disease can be exhausting, overwhelming, and isolating. It’s important to have a space in which you feel seen, […]
Parent & Caregiver Support Group
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 […]
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 […]