Michigan Medicine receives rare disease center of excellence designation

May 4, 2023  //  FOUND IN: News

Michigan Medicine has been named a National Organization for Rare Disorders (NORD) Rare Disease Center of Excellence.

The designation makes Michigan Medicine one of 40 U.S. academic medical centers selected to be a part of the first-of-it-kind national network of medical institutions in the country dedicated to diagnosing, treating, and researching all rare diseases.  The network, led by NORD, 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. 

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 and research and development funds are sorely lacking. As a result, 95% of the more than 7,000 different rare diseases are without treatments. 

The center of excellence will be housed under the pediatric genetics division at University of Michigan Health C.S. Mott Children’s Hospital.

“We are thrilled to be partnering with NORD as a rare disease center of excellence. We are so excited about this designation for Michigan Medicine and the recognition for the care that we provide for patients with rare diseases,” said Elizabeth Ames, M.D., Ph.D., co-director of the Michigan Medicine NORD center of excellence and clinical assistant professor in the pediatrics genetics division at Mott.

“Children and adults with rare diseases are an often-overlooked patient demographic. It is our responsibility and privilege to care for these underserved patients. We are committed to improving the lives of rare disease patients throughout Michigan and the world, and we look forward to working with NORD for years to come.”

NORD has designated qualified world-class academic clinical centers 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.

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. 

“Right now, far too many rare diseases are without an established standard of care. The Rare Disease 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 Michigan Medicine 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 and the full list of Rare Disease Centers of Excellence, visit NORD’s website.