MMI collaboration named rare disease center of excellence

UNMC’s Munroe-Meyer Institute (MMI) on Thursday announced a collaborative designation as a National Organization for Rare Disorders (NORD) Rare Disease Center of Excellence.

The MMI Department of Genetic Medicine, partnering with Children’s Hospital & Medical Center and Nebraska Medicine, joins a highly select group of 31 medical centers nationwide as part of an innovative network seeking to expand access and advance care and research for patients with rare diseases in the United States.

The program is led by the National Organization for Rare Disorders (NORD), with a goal to foster knowledge-sharing between experts across the country, connect patients to appropriate specialists regardless of disease or geography and improve the pace of progress in rare disease diagnosis, treatment and research.

"The designation as a Rare Disease Center of Excellence recognizes the expertise and passion of the genetic specialists and clinical providers at MMI, Nebraska Medicine and Children’s," said Karoly Mirnics, MD, PhD, director of MMI. "This designation and collaboration will lead to more robust and innovative therapeutic research that then will lead to improved care and more effective treatments."

"We are confident this effort will play a major role in helping millions of people nationwide," said Cory Shaw, executive vice president-chief operating officer at Nebraska Medicine. "We look forward to teaming up with MMI and Children’s as a member of a select group of institutions working collaboratively to develop new studies and therapies for some of the world's rarest diseases."

"I am proud of the highly skilled, caring people this designation represents; it is external recognition of the expertise our clinical teams bring to the diagnosis and treatment of rare disorders," said Christopher G. Maloney, MD, PhD, Children’s executive vice president, chief clinical officer and physician-in-chief. "Being part of the NORD network will help us continue to improve the lives of children, ensuring the very best access, care and research for the families and communities we serve."

People living with rare diseases frequently face many challenges in finding a diagnosis and quality clinical care. In establishing the Centers of Excellence program, NORD has designated clinical centers across the United States that provide exceptional rare disease care and demonstrate a deep commitment to serving rare disease patients and their families using a holistic, state-of-the-art approach.

NORD selected each center 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. 

Any disease that affects fewer than 200,000 people in the U.S. is considered rare, according to the National Institutes of Health. There are more than 7,000 rare diseases and 25 million to 30 million Americans estimated to be currently living with a rare disease. More than 90 percent of rare diseases lack an FDA-approved treatment.

"Right now, far too many rare diseases are without an established standard of care. The 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 the Munroe-Meyer Institute/Nebraska Medicine/Children’s Hospital collaboration 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 on the NORD Rare Disease Centers of Excellence program and the full list of centers, visit the program website.