News

November 26, 2020November 26, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

News, syndicated

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to ... Read more

November 25, 2020November 25, 2020

Rare Case of Cushing’s Disease Due to ‘Collision’ Brain Tumor Reported

News

Researchers report a very rare case of Cushing’s disease in a 34-year-old woman caused by a “collision” brain tumor, a tumor simultaneously consisting of a meningioma and a pituitary adenoma. ... Read more

November 18, 2020November 18, 2020

Patients With Ectopic Cushing’s Face Healthcare Challenges in Colombia, Study Says

News

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 ... Read more

November 18, 2020November 18, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

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 ... Read more

November 13, 2020November 13, 2020

Cushing’s Disease Linked to Rare Pituicytoma in Case Report

News

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, ... Read more

November 11, 2020November 11, 2020

AllianceRx Walgreens Prime Chosen as Sole Supplier of Metopirone in US

News

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 ... Read more

November 6, 2020November 6, 2020

Report Describes Two Cases of Cushing’s Syndrome Diagnosis After Pregnancy

News

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 ... Read more

November 4, 2020November 4, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

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 ... Read more

October 30, 2020October 30, 2020

Isturisa Quickly, Safely Lowers Cortisol Levels in 3 Severe Cushing’s Cases

News

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 ... Read more

October 28, 2020October 28, 2020

Even Slightly High Cortisol Levels Can Have Negative Impact on Mental Health

News

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 ... Read more