UC San Diego and Rady Children’s Join National Rare Disease Center Network
For families still searching for answers, the diagnostic odyssey of a rare condition can stretch across years — and that delay reshapes the entire management pathway, from when targeted therapy can begin to long-term quality of life.
The National Organization for Rare Disorders (NORD) has now designated UC San Diego School of Medicine and Rady Children's Health San Diego together as a Rare Disease Center of Excellence, linking the region's pediatric and adult rare disease programs into a 49-site national network designed to compress that timeline.
The network behind the designation
The San Diego center now sits inside a first-of-its-kind coalition of 49 designated centers across 28 states and the District of Columbia, affiliated with more than 150 academic medical centers, research institutions, and children's hospitals. NORD built the network around four aims: reducing time to diagnosis, expanding access to subspecialists, training the next generation of rare disease clinicians, and accelerating research across the lifespan. For the more than 30 million Americans living with a rare condition — a population in which children are heavily represented — that infrastructure directly shapes who gets seen, how quickly, and with what therapeutic options available.
Why the combined model matters clinically
What makes this announcement relevant to our immunology lens is the deliberate fusion of adult and pediatric expertise under one operational roof. Kristen Wigby, MD, who directs the new UC San Diego & Rady Children's Health San Diego Rare Disease Center of Excellence, described the structure as an "integrated discovery-to-care model" connecting research, genomic medicine, and specialized clinical care. Her overlapping roles — associate clinical professor of pediatrics at UC San Diego School of Medicine, associate medical director of the Rady Children's Institute for Genomic Medicine, and clinical geneticist at Rady Children's Hospital San Diego — matter directly when rapid sequencing can shorten the search for a molecular diagnosis and refocus an immune workup around a confirmed etiology.
Gary Silverman, MD, PhD, associate dean for children's academic programs and chair of the Department of Pediatrics at UC San Diego School of Medicine and physician-in-chief and chief scientific officer at Rady Children's Hospital San Diego, framed the affiliation as pediatric and adult specialists, genomic medicine, and translational research "functioning as one integrated team" — a structure that, for families, ideally removes the handoff gaps that so often complicate the adolescent-to-adult transition. Pamela Gavin, NORD's chief executive officer, welcomed the newly designated cohort, noting that the combined clinical and research strength of these centers will reinforce the broader network.
What to track next
For families and referring clinicians, the immediate practical question is access. Watch for an established intake pathway into the new center, including how quickly genomic medicine consultation can be activated through the Rady Children's Institute for Genomic Medicine and how adolescents move into adult rare disease care without losing continuity. Over the coming year we will be following published time-to-diagnosis benchmarks across the 49-site network, expanded trial enrollment for pediatric rare conditions, and clearer cross-site referral agreements that let a child in one state reach a subspecialist in another without restarting the workup from zero.