The study of delays in diagnoses of rare diseases from Katie Corcoran, a sociologist in the West Virginia University Eberly College of Arts and Sciences, will evaluate the impact of patients’ race and gender and whether physicians share large numbers of patients.
Tag: Rare Disorders
National Experts Available for Rare Disease Day: February 28, 2023
February 28th marks Rare Disease Day – a day designated to driving awareness and change for the more than 25 million Americans and 300 million people worldwide living and struggling with a rare disease. Subject matter experts from the National Organization of Rare Disorders (NORD), America’s longest-standing rare disease patient advocacy organization are available to weigh-in on this important public health matter.
Tufts Scientist Teams Up with Families to Find a Treatment for Rare Disease
Tufts neuroscientist Michele Jacob studies the CTNNB1 gene, which is crucial for cell development, but a mutation in the gene can result in a developmental disorder with no cure
VUMC Named Center of Excellence by the National Organization for Rare Disorders
The Vanderbilt Undiagnosed Diseases Program (VUDP), which accepts patients with undiagnosed and rare diseases, will be part of a unique network of institutions dedicated to the outstanding treatment of rare disease patients and collaboration to improve standards of care, advance research and increase awareness about rare diseases in the broader medical and patient communities.