09/21/2026 | Press release | Distributed by Public on 09/21/2026 11:47
Designation joins UC San Diego and Rady Children's with a national network spanning more than 150 academic medical centers, research institutions, and children's hospitals working together to advance rare disease care and research in Southern California and nationwide
SAN DIEGO, Calif. - Sept. 21, 2026 - UC San Diego and Rady Children's Health San Diego today announced that they have been designated together as a NORD® Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD®). The designation recognizes UC San Diego and Rady Children's leadership in rare disease care and research and connects its experts with a national network working to improve diagnosis, care, and research for more than 30 million Americans living with rare diseases.
Rady Children's and UC San Diego join a first-of-its-kind national network of 49 designated Rare Disease Centers of Excellence across 28 states and the District of Columbia. Through affiliations with more than 150 academic medical centers, research institutions, and children's hospitals, this world-class network works together to reduce time to diagnosis, expand access to specialists, train the next generation of rare disease experts, and accelerate research.
"Joining the NORD® Rare Disease Centers of Excellence Network marks a significant milestone in our commitment to addressing the complex and often unmet needs of individuals and families affected by rare diseases," said Kristen Wigby, MD, director of the UC San Diego & Rady Children's Health San Diego Rare Disease Center of Excellence. "Through this collaboration, we are strengthening an integrated discovery-to-care model that connects groundbreaking research, genomic medicine and specialized clinical care. Our goal is to accelerate diagnosis, expand access to innovative therapies and improve long-term outcomes for patients across the lifespan."
Wigby is an associate professor of pediatrics at UC San Diego School of Medicine, associate medical director of the Rady Children's Institute for Genomic Medicine, and a clinical geneticist at Rady Children's Hospital San Diego.
"The designation as a NORD Rare Disease Center of Excellence reflects the strength of the affiliation between UC San Diego School of Medicine and Rady Children's Hospital San Diego," said 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. "Delivering exceptional, compassionate clinical care to all of the children and families who depend on us is central to our shared mission. Our institutions function as one integrated team, uniting pediatric and adult expertise, genomic medicine, translational research under a single collaborative model. Being named a Center of Excellence validates that model and positions our integrated program to lead nationally in improving diagnosis, care coordination and research for the rare disease community."
"We're proud to welcome these newly designated Rare Disease Centers of Excellence, whose clinical expertise, research strength, and commitment to collaboration will strengthen this national network," said Pamela Gavin, NORD Chief Executive Officer. "By connecting leading institutions across the country, the NORD Rare Disease Centers of Excellence Network transforms individual organizational expertise into a shared national healthcare infrastructure that expands what is possible for millions of people living with rare diseases."
Connecting Rare Disease Expertise and Research Nationwide
More than 30 million Americans live with rare diseases. More than 10,000 rare diseases have been identified, and an estimated 250 additional conditions are identified each year. Yet clinical expertise and research remain fragmented, making it difficult for people to find appropriate specialists and research opportunities and for institutions to share the knowledge and data needed to accelerate discovery.
As an RD CoE, UC San Diego and Rady Children's will collaborate with rare disease experts across the country to discuss complex cases, share clinical and research knowledge, strengthen referral pathways, and advance research. Through cross-network case conferences, the RD CoE Network has discussed nearly 90 complex rare disease cases, engaging more than 2,000 health care professionals, researchers, and trainees in shared learning and collaborative problem-solving.
For people living with rare diseases, these connections can be critical. Reaching an accurate diagnosis may take five to seven years or longer and involve numerous specialists and repeated testing. Even after diagnosis, individuals and families may struggle to find expert care or opportunities to participate in clinical trials and other research. The NORD RD CoE Network helps bridge gaps in clinical expertise across institutions and state lines, making specialized knowledge more accessible.
Rady Children's and UC San Diego earned their designation through NORD's rigorous review process, meeting benchmarks for comprehensive genetics and metabolic services, coordinated pediatric and adult care across specialties, rare disease research, workforce training, and community education. To learn more about the NORD Rare Disease Centers of Excellence Network, visit rarediseases.org/center-of-excellence.
About Rady Children's Health
Rady Children's Health (RCH), a premier pediatric healthcare system in Southern California, unites the trusted expertise of Children's Hospital of Orange County (CHOC), nationally recognized for its commitment to safe, high-quality care, and Rady Children's Hospital San Diego, ranked among the nation's top 10 children's hospitals by U.S. News & World Report. With three hospitals, a growing network of primary and specialty care centers spanning six counties, and two of the region's Level 1 pediatric trauma centers, RCH is a trusted partner for families seeking safe, high-quality care. Building on a combined legacy of more than a century of clinical excellence, RCH is dedicated to advancing children's health through leading-edge research, innovative treatments, and compassionate care.
About UC San Diego
Established in 1968, University of California San Diego School of Medicine is a nationally recognized leader in medical education, biomedical research and health care innovation. As the only medical school in the region, UC San Diego School of Medicine is home to a vibrant community of more than 1,800 faculty, 1,100 medical and graduate students and 1,500 residents, fellows and post-doctoral researchers across 20 academic departments. In 2026, U.S. News & World Report awarded the School of Medicine Tier 1 rankings in the Best Medical Schools: Research and Primary Care categories, a rare distinction held by only one other medical school in the country.
About the National Organization for Rare Disorders
Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent nonprofit organization dedicated to improving the health and lives of more than 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations and 49 NORD Rare Disease Centers of Excellence Network Members, NORD advances care, research, education, and advocacy on behalf of the rare disease community. Learn more at rarediseases.org.