Life After the Cut
Patients with rare diseases grapple with uncertainty amid NIH funding cuts Milan Afshar sat on an 8 a.m. flight from Chicago to Baltimore in February 2024, twisting his ring as he watched the sunrise through the window. It was a routine medical trip, but his mind swirled with anxiety about his mysterious illness and the […]
What to Do When You’re Diagnosed With a Rare Disease
“Rare disease.” The words themselves are uncomfortable to hear or say. And when it comes to a diagnosis of an uncommon disorder, information, research and support for patients may be scant. Fortunately, though a condition may be uncommon, individuals dealing with a rare disease are not alone. And finding connections — a specialist, support group […]
