Pediatrics World Conference 2026

Biography

Pamela Artigas is the President and Executive Director of The Association for the Bladder Exstrophy Community, where she has spent more than a decade building trusted relationships across the international pediatric urology and rare disease communities. She serves as a strategic bridge between families, global surgeons, hospitals, and researchers to advance patient-centered advocacy and family-centered care.

Under her leadership, A-BE-C has expanded its global support networks and connected families to multidisciplinary care teams worldwide, including extensive work in India and Uganda. An international speaker, she has presented her work across Europe, the Americas, Africa, and Asia, and is the co-author of Advocacy for the Exstrophy Community. Pamela brings a powerful blend of professional leadership and lived experience to her work as the adoptive mother of two medically complex children

Abstract

For children born with rare and complex congenital conditions, surgery may be essential but it is only the beginning of a lifelong healthcare journey. What happens after the operation, and whether a child has equitable access to knowledgeable care, information, support, and follow-up, can profoundly influence long-term outcomes.

As an adoptive mother of two medically complex children one born with bladder exstrophy and another with Tetralogy of Fallot and Ehlers-Danlos syndrome.Pamela Artigas brings a perspective shaped by lived experience and more than a decade of patient advocacy and global collaboration. Through her leadership of the Association for the Bladder Exstrophy Community, she has worked alongside families, physicians, researchers, hospitals, and healthcare systems across five continents, helping bridge the gap between the patient and family experience and the medical, research, and healthcare communities.

Using bladder exstrophy as a lens, this keynote will explore the intersection of equity, access, and outcomes in pediatric healthcare. It will examine the challenges families face when specialized expertise is geographically or financially inaccessible, when care becomes fragmented, and when healthcare systems focus primarily on the immediate surgical outcome rather than the child's lifelong wellbeing.

The presentation will highlight the importance of incorporating patient and family perspectives into clinical care, research, education, and healthcare planning. Lived experience can identify needs that may not be visible through traditional clinical measures and can help clinicians and researchers better understand the realities families face long after they leave the hospital.

Drawing on A-BE-C's work with families and medical professionals across five continents, the keynote will demonstrate how meaningful partnerships between patient communities, researchers, physicians, hospitals, and healthcare systems can identify gaps in care, inform research, strengthen education, and ultimately improve outcomes.

Ultimately, this presentation asks pediatric healthcare professionals to reconsider what constitutes a successful outcome. A successful surgery is not necessarily a successful lifelong outcome. Equity is not simply access to an operation; it is access to the knowledge, expertise, continuity of care, support, and opportunities necessary for a child to grow, develop, and thrive. By placing lived experience alongside clinical expertise, pediatric healthcare can move beyond treating a condition toward building systems of care that support the whole child and family from diagnosis and treatment through childhood, adolescence, and adulthood.