Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
There are sets of microRNAs that may be used as markers for inherited or newly arising primary macronodular adrenal hyperplasia (PMAH), a rare cause of Cushing’s syndrome, a small study found. According to researchers, these microRNAs — short RNA molecules that help control the activity of certain genes — also…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
Corcept Therapeutics is on track to ask the U.S. Food and Drug Administration (FDA) to approve the investigational therapy relacorilant to treat Cushing’s syndrome by the middle of next year, the company announced. Cushing’s syndrome is characterized by excessive levels of the stress hormone cortisol, which causes a range of…
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
Patients with Cushing’s syndrome are almost two times more likely to develop sleep apnea — a condition in which a person ceases to breathe for at least 10 seconds while sleeping — than the general population, according to a U.S. database study. These findings highlight the importance of screening for…
Excessive cortisol might have triggered an acute exacerbation of chronic hepatitis C — an inflammation of the liver caused by an infection with the hepatitis C virus — in a woman who also had Cushing’s syndrome, according to a recent report. The woman, who was scheduled to undergo an adrenalectomy…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
When symptoms of Cushing’s syndrome return after adrenal cancer surgery, this may indicate that tumor cells have spread to other locations, a case report suggests. The report, “Functioning metastasis from adrenocortical carcinoma,” was published in the journal BMJ Case Reports. Malignant tumors in the adrenal glands —…
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