News

Nominations Open for 2022 Eurordis Black Pearl Awards

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Glucocorticoid Use Tied to Complications in Exogenous Cushing’s Patient

A man with exogenous, or therapy-related, Cushing’s syndrome, caused by long-term glucocorticoid use for Crohn’s disease, developed adrenal insufficiency after going into septic shock, a case study reported. This case highlights the dangers of adrenal insufficiency in patients on long-term glucocorticoid therapy during severe illness, and the need for quick…

Excess Thyroid Hormones Can Be Rare Complication After Surgery

Thyrotoxicosis, or abnormally high levels of thyroid hormones in the body, is a rare complication that can occur in people with Cushing’s disease who undergo tumor-removal surgery, a new report highlights. The study, “Management of thyrotoxicosis occurring after surgery for Cushing’s disease: a case series,” was…

Too Many Patients Feel Unprepared for Recovery After Surgery

Many patients with Cushing’s syndrome felt unprepared for the recovery phase following curative surgery, a survey study has found. The recovery time was considerably longer than expected and about 32% of patients denied receiving enough information from their healthcare providers. Survey findings also suggested that increasing communication between physicians and…

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Case Report Describes Rare Cushing’s Complication

A recent report describes the case of a woman with adrenocorticotropic hormone (ACTH)-independent Cushing’s syndrome who remained undiagnosed for two years after developing femoral avascular necrosis — a condition in which the bone tissue around the head of the thighbone dies due to lack of blood supply. Although bone avascular…