The PFIC Network is honored to be able to offer programs specifically for patients and caregivers affected by Progressive Familial Intrahepatic Cholestasis, PFIC. We are a group of PFIC families who have come together to help other PFIC families. We recognize the emotional needs of the disease from experience, and we want to help. That is why we have created multiple programs to provide the much needed patient and caregiver support that we all need.
Parent Ambassador Program
There is an extreme need for individual peer support and mentorship that only patients or caregivers of the disease can provide based on firsthand experiences. We have recognized the impact of mentors who understand the specific burdens of that population. Not only will mentors be available for support in their own communities, but they will also be able to identify the knowledge and resource gaps that each population may have and work towards finding solutions.
All mentors are provided with a basic training session over the phone/zoom to discuss the capacity in which we may be able to provide assistance and where we may need to defer out. Some needs may not be able to be addressed, but we will continue to communicate those and work on finding solutions. Needs may vary from having a person to share stories to finding a specialist to getting genetic testing done to navigating insurance issues.
Teen & Young Adult Ambassador Program
It is apparent that there is a lack of peer support for young adults living with PFIC. Many of these young adults were young children when their parents first found any peer support forum where the focus can be on the caregiver. While many have joined the peer support group alongside their parents, there has not been a space or any formalized way for young adults to express themselves and connect with others their age also living with PFIC.
The program will serve to give PFIC teens and young adults the space and the resources needed so they can connect with others who also have PFIC. This program allows PFIC youth their own voice to express their journey with their peers through social media and will create opportunities for in person retreats.
The majority of patients who are diagnosed with PFIC are young children. As these children reach school age and are able to voice their concerns, they often feel isolated, scared, sad and alone because they feel different. Having another child to connect with in their age group, whether they are itchy, have an ostomy bag, dislike taking medication every day, have had frequent hospitalizations, or are on the list for a liver transplant can facilitate the acceptance of dealing with a chronic disease at a young age. Providing opportunities for these patients to connect is important to supporting their emotional well-being.
This program is driven by our PFIC children to bring families closer together. PFIC pals has a few initiatives including a Holiday card & gift exchange and a pen pals program. Most recently, coordinated zoom meeting efforts! PFIC pals will also send care packages to children who are in the hospital for surgeries. PFIC pals is always welcome to new ideas to involve the community and our children. Contact us if you or your child would like to find a PFIC Pal!
Emotional Support & Bereavement Program
A mental health professional, board-certified and Licensed Master Social Worker (LMSW) or Licensed Clinical Social Worker (LCSW-C), will offer up to four (4) therapy sessions for any member of the family. These sessions will be held through a telehealth platform (Zoom, Microsoft Teams, Doxy.me, etc.) and appointments will be scheduled based on shared availability of the mental health professional and the family member. During these sessions, the mental health professional will also work to connect the family member to local mental health treatment and services, as needed, in the event continued and on-going support is requested.
Who can access this program: Any patient, caregiver or family who is struggling with the emotional burden of PFIC OR who suffers a loss due to PFIC. To initiate, a family member (or someone on behalf of the family) can access this program by contacting the PFIC Network.