What We Do

Patients & Family Voice

The Starzl Network for Excellence in Pediatric Transplantation aims to give all children access to the best care. And we strive to continually “make the best better.”

Our goal, as Dr. Starzl hoped, is to measure children’s outcomes not in years or even decades, but in lifetimes. We invite transplant families to join us in this quest.

PFV Mission

The Starzl Network for Excellence in Pediatric Transplantation Patient & Family Voice serves to support and unite the global pediatric transplant community through collaboration with transplant community stakeholders to develop and implement innovative ideas to advocate and improve the lives of all pediatric pre- and post-transplant patients and their families.

Ways to Get Involved

Join Our Team

Please see the PFV roles below on how to get involved.

Research Ideas

Give us your ideas for transplant-related research. We'd love to hear from you.

Share Your Story

Tell us your transplant family story. We want to hear it! And we’ll share it on our website and social media channels.

PFV Roles

Co-chairs

Represent the PFV group to the larger Network, participate on Network, project, and PFV calls.

Center Delegates

Represent individual center to help welcome new families and participate on monthly PFV calls and a project team.

Representatives

Interested in receiving information from the Starzl Network and may be asked to participate in surveys and other data collection, as needed.

Join Us on Facebook

All pediatric liver transplant parents are invited to join our private Facebook group. Please request access here, and be sure to answer the screening questions.

Lucas’ Story

Shortly after he was born, Lucas Goeller of Pittsburgh, Pa., developed biliary atresia. The rare disease restricts the bile ducts in the liver, causing organ failure and requiring a transplant.

Lucas was under the care of a team of experts at UPMC Children’s Hospital of Pittsburgh. But as months went on, his illness got worse.

Lucas’s family started a public campaign to find a liver donor. A family in Nebraska whose daughter had a terminal brain stem tumor donated her liver to Lucas.

After 18 months, he had a life-saving liver transplant.

Thanks to his donor and transplant team, Lucas enjoys playing with his brothers and attending school - he just started kindergarten.

Additional Resources

Transplant Families – The Starzl Transplant Network is happy to partner with Transplant Families, a nonprofit organization led by transplant parents and family members dedicated to providing resources to patients and families throughout each stage of the transplant journey.