May 4, 2023 – Cleveland Clinic has been designated a Rare Disease Center of Excellence by the National Organization for Rare Disorders. 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.
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.
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.