Children’s of Alabama and UAB Medicine Join NORD Rare Disease Centers of Excellence Network
The National Organization for Rare Disorders has designated Children’s of Alabama and UAB Medicine as NORD Rare Disease Centers of Excellence. UAB Medicine and Children’s join 31 medical centers as part of the innovative network seeking to expand access, advance care and enhance research for rare diseases patients in the United States.
“We are honored to receive a Rare Disease Centers of Excellence designation as recognition of UAB and Children’s continued commitment to provide cutting-edge treatment and research for much of the Southeast,” said Nathaniel Robin, M.D., professor and clinical director in the UAB Department of Genetics and professor of pediatrics in the UAB Marnix E. Heersink School of Medicine and at Children’s. “The collaborative network will allow us to serve our community and others across the nation while advancing the rare diseases field as a whole.”
According to the National Institutes of Health, any disease that affects fewer than 200,000 people in the United States is considered rare. There are 7,000 rare diseases, and 25 million to 30 million Americans are estimated to live with a rare disease. People living with rare diseases frequently face challenges finding diagnosis and quality clinical care. Additionally, more than 90 percent of rare diseases lack an approved treatment from the Food and Drug Administration.
“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 UAB Medicine and Children’s of Alabama as NORD Rare Disease Centers 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.”
To read the full article and learn more about this development, please visit the Children’s of Alabama and UAB Medicine Join NORD Rare Disease Centers of Excellence Network news.
