University of Iowa Health Care has been designated a National Organization for Rare Diseases (NORD) Rare Disease Center of Excellence, joining a highly select group of 31 medical centers across the country which serve as part of an innovative network seeking to expand access and advance care and research for rare disease patients in the United States. The program’s goal is to foster knowledge sharing between experts across the country, connect patients to appropriate specialists regardless of disease or geography, and to improve the pace of progress in rare disease diagnosis, treatment, and research.

“This designation brings the rare disease diagnosis, management, and research expertise within University of Iowa Health Care together with 30 other designated centers nationwide to promote equitable, advanced, and standardized health care to people living with rare disorders,” says Hatem El-Shanti, MD, director of the Division of Medical Genetics and Genomics with the Stead Family Department of Pediatrics at the UI Carver College of Medicine.

People living with rare diseases frequently face many challenges in finding a diagnosis and quality clinical care. In establishing the Centers of Excellence program, NORD has designated clinical centers across the United States that provide exceptional rare disease care and have demonstrated a deep commitment to serving rare disease patients and their families using a holistic, state-of-the-art approach. Each center was selected by NORD in a competitive application process requiring evidence of staffing with experts across multiple specialties to meet the needs of rare disease patients and significant contributions to rare disease patient education, physician training, and research. The NORD Rare Disease Centers of Excellence program is formulated to achieve better outcomes for all members of the rare disease community. This collaborative partnership strives to push the rare disease field forward by establishing and implementing new standards of care and innovating around new treatments, therapies, and research. 

Hatem El Shanti, portrait
Hatem El-Shanti, MD, director of the Division of Medical Genetics and Genomics with the Stead Family Department of Pediatrics at the UI Carver College of Medicine

Any disease that affects fewer than 200,000 people in the US is considered rare, according to the National Institutes of Health. There are over 7,000 rare diseases and 25-30 million Americans estimated to be currently living with rare diseases. More than 90% of rare diseases lack an FDA-approved treatment.

“Right now, far too many rare diseases are without an established standard of care. The Centers for Excellence program will help set that standard – for patients, clinicians, and medical centers alike,” said Ed Neilan, Chief Scientific and Medical Officer of NORD. “We are proud to announce UI Health Care as a NORD Rare Disease Center of Excellence and look forward to their many further contributions as we collectively seek to improve health equity, care, and research to support all individuals with rare diseases.”