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 ... 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 ... 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 ... 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 ... 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 ... Read more
November 12, 2020November 10, 2020
A Letter to My Newly Diagnosed Self
Columns, Perpetually Cushie – a Column by Kat Rees
Thinking back over the last few years following my recovery from Cushing’s disease, I still deal with some painful ... 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 ... 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 ... 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 ... 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 ... 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 — ... Read more
October 23, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News, syndicated
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will ... Read more

Author Details

Joe Pierce

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 12, 2020November 10, 2020

A Letter to My Newly Diagnosed Self

Columns, Perpetually Cushie – a Column by Kat Rees

Thinking back over the last few years following my recovery from Cushing’s disease, I still deal with some painful thoughts. To help process those thoughts, I wrote a letter ... 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