News

A 14-year-old girl with aggressive Cushing’s disease developed cavernous sinus thrombosis — a rare condition that causes blood clots to form in a cavity at the base of the brain — after an initial surgery to remove a benign tumor in the pituitary gland. Her case highlights that cavernous sinus…

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…

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…

People with Cushing’s disease who are treated with Isturisa (osilodrostat) should be monitored for the possibility of developing adrenal insufficiency, a report highlights. The case report, “Osilodrostat in Cushing’s disease: The risk of delayed adrenal insufficiency should be carefully monitored,” was published in the journal…

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…

A type of tumor in the brain’s pituitary gland, which causes Cushing’s disease, has been found to be more invasive, and its presence lowers the likelihood of remission following surgery. According to scientists, these study findings support the need to identify types of pituitary tumors to minimize post-surgical relapse.

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

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…

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…

The risk of blood clot formation — commonly higher than normal in people with Cushing’s syndrome — persists during the first six months after curative surgery, but is comparable to that of healthy people in patients achieving long-term remission, a study has found. These findings may help physicians decide…