Marisa Wexler, MS, senior science writer —

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

Even slightly higher-than-normal levels of cortisol — the hormone that is abnormally high in people with Cushing’s syndrome — can have a detrimental effect on mental health, a new study suggests. The study, “Mental health in patients with adrenal incidentalomas: is there a relation with…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

A woman with undiagnosed Cushing’s disease experienced a resolution of her hypercortisolism symptoms after a spontaneous pituitary apoplexy, and was retrospectively diagnosed via hair cortisol analysis, according to a recent case report. This study highlights the utility of testing cortisol levels in hair as a means of identifying…

People with Cushing’s syndrome experience muscle weakness that persists even when the disorder is in remission, a new study shows. The study, “Persisting muscle dysfunction in Cushing’s syndrome despite biochemical remission,” was published in The Journal of Clinical Endocrinology and Metabolism. Cushing’s syndrome is characterized by…

People with Cushing’s syndrome commonly experience cognitive and emotional problems, a new study indicates. The study, “Neuropsychological and Emotional Functioning in Patients with Cushing’s Syndrome,” was published in Behavioural Neurology. Cushing’s syndrome is characterized by abnormally high levels of the hormone cortisol. (Cushing’s disease…

Treatment with Isturisa (osilodrostat) led to a rapid and sustained reduction in cortisol levels and was well-tolerated in people with Cushing’s disease, according to newly published data from the LINC-3 clinical trial. The results were published in The Lancet Diabetes & Endocrinology, in the article “…

Isturisa (osilodrostat) is now available in Germany to treat adults with endogenous Cushing’s syndrome. The announcement by Recordati Rare Diseases, which acquired rights to Isturisa from its original developer Novartis, follows the medication recently becoming available in the U.S. and in France. Isturisa…

A newly developed smart contact lens might be used to measure levels of the hormone cortisol in a person’s tears, which could be helpful in disorders such as Cushing’s disease. The new device was described in Science Advances, in the study, “Smart, soft contact lens for…

Cushing’s syndrome treatment Isturisa (osilodrostat) now is commercially available in France. The announcement from Recordati Rare Diseases comes soon after the medication became fully available for sale and distribution to adults in the U.S. The company stated that the medication will be made available elsewhere in the European Union…