• Caregiver Connection Program
  • Offered under the umbrella of the Society of Pediatric Liver Transplantation, but run by PFEP.
  • Pediatric liver hospitals associated with SPLIT will have access to participate in the program.
  • Hospitals looking to join will be encouraged to have 1 or more PFEP representatives for their center to take part in the mentoring support.
  • The goal of this program is to bridge the gap between caregivers and their hospitals by helping connect newly diagnosed families with veteran families within the pediatric liver community, and help support the mental and emotional load pediatric liver transplantation brings to those closely affected.
• If you are a caregiver interested in helping mentor a new family, please fill out the interest form here: https://docs.google.com/forms/d/1eKUT7SY_c-TBviNY0qoW6zdLfSDnNN8KqwyzEou9GsE/edit
  • New Guides are asked to attend a virtual training session, complete a background check, and sign a policy agreement form.
• Tentative Start Date: September 2025

• Developed in collaboration with the Society of Pediatric Liver Transplant, Patients Families and Engaged Partners Committee (SPLIT-PFEP), Project Hope aims to leverage the lived experiences of past transplant recipients to help current and future pediatric transplant patients navigate the journey through a unique but shared experiential lens.
• Support will include longitudinal 1-1 partnerships and group sessions.
• Project Hope Video Description
• Interested in helping/mentoring/collaborating? Please fill out this form: Interest Form
• Want to get paired with a mentor? Please fill out this form: Mentor Request Form

Lead - Emma Long, Georgetown PFEP

• Children's Book Project - Funded by: IPSEN
  SPLIT PFEP is collaborating with The Strength of My Scars (www.strengthofmyscars.com) and the PFIC Network (www.pfic.org) to create an age appropriate children's book for families affected by the rare disease Progressive Familial Intrahepatic Cholestasis (PFIC). Our goal is to have this book ready for distribution by December 2025, and it will then be shipped to SPLIT affiliated hospitals as a resource to hand out to new (or past) families diagnosed with PFIC. SPLIT PFEP is excited to help provide our families with proper educational resources, and will be looking to produce more rare disease and liver transplant books in the near future.
  
• Transplant Journey Support Platform
  PFEP is collaborating with MultiD and other SPLIT members to create a user-friendly resource to help families through pediatric liver transplantation. Our platform will feature videos, tips, and stories from families and experts, tackling challenges and sharing diverse experiences. Designed with stressed caregivers in mind, this guide will use simple language and an easy-to-navigate format. They will be able to quickly review solutions to common problems and connect with helpful resources. If you are interested in volunteering to collaborate or consult on this project’s content and development please share your contact info with Emma Long here: share your contact info

Lead - Jessica Callear, Nemours PFEP

• Media Campaign
  • Currently 8 Pediatric Liver Hospitals participating in SPLIT have teamed up together to bring more awareness, and better education to the Non-Direct Living Liver Donor option offered at many centers across the USA and Canada. Our team is working on partnering with a national media group to share the stories of multiple PFEP members who are Non-Direct donors to pediatric patients, and follow the journey from beginning to end for someone who decides to be a living liver donor. The goal is to air this piece for October - National Liver Disease Awareness Month.
• International Awareness Collaboration
  • SPLIT PFEP is teaming up with The Fight for Life Club to help better educate families faced with liver transplant for their child within Mexico. PFEP is committed to creating literature and media clips to help aid the FFLC in raising awareness, and supporting families within the liver community. To learn more about the FFLC visit their website here: www.fightforlifeclub.org.mx

Lead: Stephanie Skrede, Lurie Children's PFEP

The SPLIT Transition of Care Program is designed to support adolescents and young adults with liver transplants as they move from pediatric to adult healthcare. Our goal is to ensure continuity of care, promote self-management, and improve long-term health outcomes. By equipping patients, families, and healthcare teams with the tools and resources needed for a successful transition, we aim to reduce gaps in care and foster independence in managing lifelong transplant needs.

• Designed to support pediatric liver transplant recipients as they move to adult care
• Focused on improving continuity, self-management, and long-term outcomes
• Provides tools and resources for patients, families, and providers
• Addresses gaps in care during a critical developmental period
• Collaborative approach involving multidisciplinary teams
• Aligned with SPLIT’s mission to advance care and outcomes for pediatric liver transplant patients
• Data-driven: informed by evidence and patient-centered research
• Current Literature Resource in development for SPLIT Hospital use

This group is also working with Ipsen and Epic to develop proper website and app resources for children and families going through the transition of care process.