We are pleased to announce that Weill Cornell Medical Center with NewYork-Presbyterian has been designated as a NORD Rare Disease Center of Excellence, becoming one of 40 U.S. academic medical centers selected to be a part of the first-of-it-kind national network of U.S. medical institutions dedicated to diagnosing, treating, and researching all rare diseases. The network is led by the National Organization for Rare Disorders (NORD) and is designed to foster knowledge sharing between rare disease experts across the country to help meet the unmet needs of more than 25 million Americans living with a rare disease. Omar Abdul-Rahman, M.D., Chief of Medical Genetics in the Department of Pediatrics, will be the director of the Rare Disease Center of Excellence at NewYork-Presbyterian/Weill Cornell Medical Center.
Unlike other more common serious diseases like cancer and heart disease, people living with rare diseases face many challenges in finding a diagnosis and accessing quality clinical care. Because patient numbers battling a specific rare disease are so small (fewer than 200,000), physician expertise, research and development funds are sorely lacking. As a result, 95% of the more than 7,000 different rare diseases are without treatments.
NORD has designated qualified world-class academic clinical centers like NewYork-Presbyterian/Weill Cornell Medical Center across the U.S. to improve rare disease patient care by connecting rare disease patients to appropriate specialists regardless of disease or geography. These Centers provide a much-needed national infrastructure to help accelerate advancements in rare disease diagnosis, treatment, and research. 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.
As part of the NORD network, NewYork-Presbyterian/Weill Cornell will have the opportunity to participate in various working groups focusing on critical areas such as clinical trials for this patient population. By collaborating with other centers in the network, Dr. Abdul-Rahman and team can pool resources, study participants, and expertise to facilitate these trials effectively. The working groups will also address common challenges faced by centers, including the storage and sharing of genomic data, education of trainees and the public on rare diseases, support for patients throughout their diagnostic journey, and the creation of a supportive community for those with ultra-rare diseases. Additionally, NORD’s working groups will evaluate the evolving landscape of newborn screening for rare diseases.
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.
For more information about the NORD Rare Disease Centers of Excellence Program and the full list of Rare Disease Centers of Excellence, visit NORD’s website.