The National Organization for Rare Disorders has teamed up with Children’s National Health System for the Rare Disease Institute. This will be the first center to primarily focus on and look after patients of all ages with rare diseases. Read more about it here.
The institute was inspired by the Cystic Fibrosis Foundation which has been an example of excellence in improving patient care.
Times are changing. The survival rates for people with rare diseases are increasing and ways of treatment are becoming more advanced. Take Down Syndrome, for example. In the 1980’s, the life expectancy for it was up to 20 years, now it has gone up to the 50s. For Cystic Fibrosis, the life expectancy has gone from teens to 40 years of age.
The Rare Disease Institute is now a well oiled ship working out of Children’s National. Recently, it took on 12 more acres of land in Washington. It also includes the Armed Forces Institute of Pathology building, a massive parking lot, and a 300-seat lecture hall. It’s a very old building that will soon see some renovations as Children’s National is investing several hundred million into the project.
The well oiled ship consists of 14 physicians, 15 genetic counselors, two biochemical nutritionists and four clinical care coordinators. Their focus is to eliminate patient care gaps by offering training that is honed in on rare diseases.
Dr. Marshall Summar, the institute’s director spent 25 years studying biochemical disorders. He transitioned over to Children’s National in 2010 and became actively engaged in NORD which currently runs 17 disease registries.
“Children’s National is a leading medical provider for children battling rare diseases and we are pleased to designate them as NORD’s first Center of Excellence,” Peter L. Saltonstall, NORD president and CEO, said in a January 2017 press release. “This marks a major step forward in establishing rare diseases as a clinical field of medicine.”
According to the National Institute of Health, any disease that affects fewer than 200,000 people in the U.S. is considered rare. What this means is that 10 percent of Americans have one of 7,000 rare diseases.
