Cleveland Clinic Rare Disease Center Recognized as a National Center of Excellence by National Organization for Rare Disorders

May 4, 2023, Cleveland: Cleveland Clinic has been designated a Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD). The new Cleveland Clinic Center for Rare Diseases is one of 40 U.S. academic medical centers selected to join the first-of-it-kind national network dedicated to diagnosing, treating and researching all rare diseases.

The NORD Rare Disease Centers of Excellence program provides a much-needed national infrastructure to help accelerate advancements for rare diseases. The network of medical institutions, led by NORD, is designed to improve rare disease patient care by connecting patients to appropriate specialists regardless of disease or geography.   

“By joining this national network, we can collaborate closely with other academic institutions to collectively improve care for the 25 million Americans who are affected by rare diseases,” said co-director of Cleveland Clinic Center for Rare Diseases Daniel Sullivan, M.D., Internal Medicine and Geriatrics. “As a NORD-recognized center, Cleveland Clinic will have access to resources and expertise from a large network of institutions working together to innovate around new treatments, therapies and research.” 

Nearly one in 10 Americans has been diagnosed with a “rare disease” – a term used to classify a condition that affects fewer than 200,000 people. While more than 7,000 diseases are classified as rare, no treatments currently exist for 95% of these diseases.  

“Unlike more common serious illnesses, people living with rare diseases face many challenges in finding a diagnosis and accessing quality care. Being part of this network provides us the structure to collaborate with other providers, and help more patients, throughout the country,” said Center for Rare Diseases director Julie Kaplan, M.D., medical director of Center for Personalized Genetic Healthcare. “With the resources that come with being recognized as a Center of Excellence, we can further enhance care and find the best solutions for each individual patient.” 

The Cleveland Clinic Center for Rare Diseases focuses on meeting the needs of people with rare diseases through innovative research and clinical care. The center brings together experts from across Cleveland Clinic who provide care for patients with rare conditions including physicians, medical geneticists, pharmacists and genetic counselors from the Center for Personalized Genetic Healthcare. The center also includes the recently launched Undiagnosed Disease Clinic, which uses whole genome sequencing to help patients impacted by a rare, undiagnosed disease find a clinical diagnosis. These teams collaborate with scientists in Lerner Research Institute’s Genomic Medicine Institute, led by chairwoman Charis Eng, M.D., Ph.D., to drive rare disease research with the goal of better understanding multiple rare diseases. 

“Right now, far too many rare diseases are without an established standard of care. The Rare Disease 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 Cleveland Clinic 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 about the NORD Rare Disease Centers of Excellence Program, visit NORD’s website. 

About Cleveland Clinic

Cleveland Clinic is a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education. Located in Cleveland, Ohio, it was founded in 1921 by four renowned physicians with a vision of providing outstanding patient care based upon the principles of cooperation, compassion and innovation. Cleveland Clinic has pioneered many medical breakthroughs, including coronary artery bypass surgery and the first face transplant in the United States. U.S. News & World Report consistently names Cleveland Clinic as one of the nation’s best hospitals in its annual “America’s Best Hospitals” survey. Among Cleveland Clinic’s 77,000 employees worldwide are more than 5,658 salaried physicians and researchers, and 19,000 registered nurses and advanced practice providers, representing 140 medical specialties and subspecialties. Cleveland Clinic is a 6,665-bed health system that includes a 173-acre main campus near downtown Cleveland, 22 hospitals, more than 275 outpatient facilities, including locations in northeast Ohio; southeast Florida; Las Vegas, Nevada; Toronto, Canada; Abu Dhabi, UAE; and London, England. In 2022, there were 12.8 million outpatient encounters, 303,000 hospital admissions and observations, and 270,000 surgeries and procedures throughout Cleveland Clinic’s health system. Patients came for treatment from every state and 185 countries. Visit us at clevelandclinic.org. Follow us at twitter.com/ClevelandClinic. News and resources available at newsroom.clevelandclinic.org.

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