Angela Scheuerle, MD, Medical Geneticist at the UT Southwestern Medical Center, discusses National Organization for Rare Disorders’ (NORD) Rare Disease Centers of Excellence of which UT Southwestern is one.

There are currently 31 NORD Rare Disease Centers of Excellence across the United States. The primary goal for establishing this network was to advance care and expand access for rare disease patients. The second goal was to enable rare disease experts to work collaboratively, which will hopefully lead to faster progress in terms of diagnoses, treatments, and development of guidelines and new therapies.

Many of the Centers of Excellence specialize in particular rare disease areas; for example, at UT Southwestern, they are best known for their work in lipid metabolism disorders and cholesterol diseases. Additionally, UT Southwestern can care for rare disease patients across the lifespan as they have rare disease programs for all ages and, for some rare diseases, have standardized programs to transition patients from youth- to adult-centered care.