Article updated on May 5, 2026. Conference preview originally published April 22, 2026.
A critical and often overlooked topic in metabolic disorder care—the unique needs of adults living with inborn errors of metabolism—took center stage at a workshop NUCDF co-hosted during the 2026 Genetic Metabolic Dietitians International (GMDI) Conference. Also at the conference, NUCDF welcomed new Urea Cycle Disorders Nutrition Management Guidelines at a session co-chaired by Dr. Erin MacLeod, Assistant Professor of Pediatrics and Director of Metabolic Nutrition at Children’s National, and Krista Viau, PhD, RD (FDA).
NUCDF played a critical role representing the patient perspective in the creation of these guidelines. Dr. MacLeod will present the guidelines to the UCD patient community at the upcoming 2026 NUCDF Family Conference, taking place July 17-19 in Memphis, TN.
Beyond the sessions, NUCDF connected with many many incredible clinicians, dietitians, and partners at our booth—sharing resources, listening, and learning together.
A special highlight: NUCDF Executive Director Tresa Warner also spent the afternoon with Regan and Betty Dunnegan, making time for meaningful connection and conversation. Regan was one of four patients who shared her story as a young adult with OTC during our special Febrary 2026 Rare Disease Day ECHO session, "Patient voices, lived UCD experiences." Regan's mother, Betty, first connected with Tresa via NUCDF 20 years ago, when Regan was initially diagnosed with OTC.
Workshop highlighted needs of adults with metabolic disorders
Tresa Warner joined Danae Bartke, BS, RD, Executive Director of HCU Network America, and Dr. MacLeod for a workshop titled "They Aren't Just Oversized Children: Supporting Adult IEM Patients Through Life Stage Transitions" on Friday afternoon, April 24.
The session addressed a growing and underserved population. Thanks to advances in diagnosis and treatment, more individuals with urea cycle disorders (UCDs) and other inherited metabolic disorders are living into adulthood than ever before. Yet, the medical system has been slow to catch up. Much of the existing framework for metabolic care was built around pediatric patients, leaving adults navigating a landscape that wasn't designed with them in mind.
The presentation examined the complex transitions adults with UCDs face, from moving out of pediatric care systems to managing independence, employment, long-term nutrition needs, and finding knowledgeable providers. The core message was clear: adults with metabolic disorders have evolving, lifelong needs that demand tailored support, not simply a scaled-up version of childhood care.
The GMDI Conference, held every two years, brings together dietitians and healthcare professionals from around the world to advance best practices in metabolic nutrition and care, making it an ideal venue for this conversation. Visit GMDI to see the full conference agenda.
