News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…

Study Updates Prevalence of Cushing’s Syndrome Diagnoses in Sweden

In the modern era, three new cases of Cushing’s syndrome are being diagnosed annually per one million inhabitants, according to results from a study conducted in a region of Sweden. Also, more patients with ectopic Cushing’s syndrome are being diagnosed compared to prior reports, which researchers attribute to an increased awareness…

Hormonal Stimulation Improves Tumor Detection in Cushing’s, Study Finds

Giving corticotropin-releasing hormone (CRH) to Cushing’s disease patients helps improve the detection of pituitary tumors on positron emission tomography (PET) scans, increasing the chances of a more successful surgery, a study shows. The study, “CRH stimulation improves 18F-FDG-PET detection of pituitary adenomas in Cushing’s disease,” was published in the journal…