2023 International Exstrophy Conference Videos

The 2023 International Exstrophy Conference was hosted by Seattle Children’s. Realizing that care for the entire patient – beginning with appropriate surgical counseling and preparation, to psychosocial support and postoperative management – is key to successful outcomes, the sessions focused on the challenges patients and families face through a spectrum of discussions and provide tools to show that BE Doesn’t Limit ME!

A special thank you to the team at Seattle Children’s for capturing the sessions and Gery Deer with GDL Communications for making this content available to our BE community!

From Hardship to Hope: A Global Care Experience

Presented by: Anna Artigas, Teen Advocate

Navigating Life with Exstrophy | Surgical Approaches for Males and Adult Genital Reconstruction

Presented by Paul Merguerian MD 

2023 Courage to Shine Award Recipient

Jessica Sanchez

Keynote: BE Doesn’t Limit Me

Presented by Steve Schmith

Surgical Approaches for Female Exstrophy Patients

Presented by Dr Margarett Shnorhavorian

Care of the Bladder Exstrophy Patient and New Concepts in Pain Control

Presented by Amber Heberling, RN

Prevention & Management Of Urinary Tract Infection

Presented by Dr. Scott Weissman Professor of Pediatric Infectious Disease, Seattle Children’s

Gynecologic Care for the Bladder Exstrophy Patient

Presented by Dr. Angela Hernadez & Dr. Lissa Yu OBGYN, Seattle Children’s

Patient Panel: This was an interactive session with those living or caring for someone with Exstrophy.

Partnering with the Exstrophy Community to Improve Research Outcomes

Presented by Dr. Jennifer Ahn – Co-director, Reconstructive Pelvic Medicine Program, Seattle Children’s

Integrating Psychosocial Support for Patients and their Families

Presented by Emily Haddad LCSW – Johns Hopkins University School of Public Health

A Team Approach to Bladder Exstrophy Care- MIBEC

Presented by Dr. John Kryger – Chief, Division of Pediatric Urology Children’s Hospital of Wisconsin

Introduction to Mindfulness, a Unique Support Workshop

Presented by David Hlebsain, Certified Applied Compassion Trainer

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