The National Organization for Rare Disorders (NORD) has designated the Division of Medical Genetics and Genomics at The Mount Sinai Hospital as a Rare Disease Center of Excellence. With this designation, Mount Sinai will join a highly selective nationwide network of 31 medical centers that specialize in rare disorders. This newly established and innovative network seeks “to foster knowledge-sharing between experts across the country, connect patients to appropriate specialists regardless of disease or geography, and improve the pace of progress in rare disease diagnosis, treatment, and research.”
“At Mount Sinai we are committed to helping patients who have a wide range of rare disorders,” said George Diaz, MD, Ph.D., who will direct the program at the Division of Medical Genetics and Genomics at Mount Sinai. “We are both honored and excited to join this network. We especially look forward to working with others in the network to improve and hasten the treatments that millions of patients need.”
According to the National Institutes of Health, a rare disease is one that “affects fewer than 200,000 people” in the United States. More than 7,000 rare diseases have been described, affecting 25-30 million Americans. These patients can often find it challenging to arrive at a diagnosis and benefit from available treatment.
NORD’s Rare Disease Centers of Excellence program was established to help combat these challenges. At its core, the program aims to establish and implement new standards of rare disease care while also facilitating the development of new therapies and treatments. The 31 centers were chosen based on their ability to “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.” In addition, each center had to show that it has a wide range of experts who can match the diversity of patients seen around the country and that it is committed to “patient education, physician training, and research.”
The Division of Medical Genetics and Genomics at The Mount Sinai Hospital has a large team of experts who strive to provide rare-disease patients with high-quality care and access to cutting-edge treatments while also training the next generation of doctors and other health care providers in the field.
“Right now, far too many rare diseases are without an established standard of care. The Centers of 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 the Division of Medical Genetics and Genomics, Department of Genetics and Genomic Sciences, at Icahn School of Medicine at Mount Sinai 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.”