Patients with ectopic Cushing’s syndrome face challenges in their healthcare management if they live in developing countries, according to a study of cases in Colombia that describes challenges unique to the tropics. “This study may lead to the formation of groups of excellence for the management of [Cushing’s…
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
Although rare, pituicytomas should still be considered as a possible cause of Cushing’s disease in patients experiencing the typical symptoms of the disease, a case report highlights. The study, “Pituicytoma associated with Cushing’s disease: a case report and literature review,” was published in the…
HRA Pharma Rare Diseases has named AllianceRx Walgreens Prime as its exclusive pharmacy distributor for two rare disease medications: Metopirone (metyrapone), used to diagnose Cushing’s syndrome, and Lysodren (mitotane), an approved treatment for people with adrenocortical carcinoma, a rare cancer of the adrenal…
Two cases of Cushing’s syndrome that were diagnosed following pregnancy are described in a new report, which highlights the difficulty of recognizing the rare disorder in pregnant women. The report, “Cushing’s syndrome in pregnancy, diagnosed after delivery,” was published in Yeungnam University Journal of Medicine in…
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…
Isturisa (osilodrostat) rapidly and safely controlled high cortisol levels associated with severe Cushing’s syndrome in three cancer patients who could not take standard medications, a case series study reported. The study, “Efficacy and tolerance of osilodrostat in patients with severe Cushing’s syndrome due to…
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 photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
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…
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