News

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…

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…

Measuring the levels of the RNA molecule that provides instructions to make a protein called FKBP5 could be useful for assessing cortisol activity in people with Cushing’s disease, a new study indicates. The study, “Evaluation of FKBP5 as a cortisol activity biomarker in patients with ACTH-dependent…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…