Angela Scheuerle, MD, Medical Geneticist at the UT Southwestern Medical Center, discusses the importance of collaboration between clinicians to improve clinical outcomes for patients with rare diseases.
Collaboration between clinicians to faster progress in terms of diagnoses, treatments, and development of guidelines and new therapies is one of the main goals of the 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. 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. Being part of NORD’s network ultimately means that patients across the country with these disorders can be more quickly connected with the researchers at UT Southwestern. This would not only benefit individual patients, but the larger community as well as UT Southwestern continues to learn more about lipid metabolism disorders and cholesterol diseases and relays that information to other Centers of Excellence.
As Dr. Scheuerle notes, collaboration and connection between clinicians are both crucial as it leads to faster diagnoses and standardization of care. Additionally, she mentions telemedicine and virtual meetings, two health care tools that became normalized during the height of the Covid-19 pandemic but have since become less common. Dr. Scheuerle argues that this level of collaboration and connection – between multiple clinicians as well as between clinicians and patients – if continued, would improve clinical care and aid patients, particularly those who live far from a large medical center.
To learn more about the Centers of Excellence, click here.
To stay up to date with the latest news in rare diseases, sign up for one of our newsletters.