DURHAM, NC, Nov., 4, 2021— The National Organization for Rare Disorders (NORD) has designated the Duke Health Rare Disease Center as a NORD Rare Disease Center of Excellence, joining a highly select group of 31 medical centers, nationwide, 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 is being led by NORD, with a goal 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.
“We are very excited to join programs from across the country in this groundbreaking enterprise, spearheaded by NORD, to make new inroads into providing state-of-the-art treatment for patients with rare diseases. We feel that our program exemplifies the key hallmarks of the Center of Excellence designation,” said Priya Kishnani, MD, Chief of the Division of Medical Genetics, Duke Department of Pediatrics. “The focus of the Duke Health Rare Disease Center is translational work with a bench to bedside and back to bench approach with a commitment to provide excellence in clinical care to patients with rare diseases.”
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 US 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.
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 Duke Health Rare Disease Center 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.”
For more information on the NORD Rare Disease Centers of Excellence program and the full list of centers, visit the program website.