News

Even with biochemical remission — having normal biochemical markers for liver inflammation — patients with Cushing’s disease have a two times higher risk of mortality compared with people without the disorder, a Swedish study found. Cardiovascular diseases and infections were the main causes of death, highlighting the importance of close…

Subclinical Cushing’s syndrome may be a risk factor for developing central serous chorioretinopathy, an eye disorder wherein fluid accumulates at the back of the eye, according to a recent case report. The report, “Association of chronic central serous chorioretinopathy with subclinical Cushing’s syndrome,” was published in the American…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

People with active Cushing’s disease have a smaller volume of gray matter — the outer layer of the brain extending into the spinal cord, where most nerve and other cells are found — and an unusual distribution of iron in the brain, a study reported. Importantly, abnormal iron redistribution…

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

People with Cushing’s disease have a high risk of being deficient in vitamin D, but taking supplements can improve those levels, a new study indicates. Results also showed that lower vitamin D levels are associated with higher levels of cortisol, a stress hormone that is elevated in Cushing’s. The…

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…