News

Many patients with Cushing’s syndrome felt unprepared for the recovery phase following curative surgery, a survey study has found. The recovery time was considerably longer than expected and about 32% of patients denied receiving enough information from their healthcare providers. Survey findings also suggested that increasing communication between physicians and…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

The risk of blood clot formation — commonly higher than normal in people with Cushing’s syndrome — persists during the first six months after curative surgery, but is comparable to that of healthy people in patients achieving long-term remission, a study has found. These findings may help physicians decide…

A recent report describes the case of a woman with adrenocorticotropic hormone (ACTH)-independent Cushing’s syndrome who remained undiagnosed for two years after developing femoral avascular necrosis — a condition in which the bone tissue around the head of the thighbone dies due to lack of blood supply. Although bone avascular…

Measuring the levels of the RNA molecule that provides instructions to make a protein called FKBP5 could be useful for assessing cortisol activity in people with Cushing’s disease, a new study indicates. The study, “Evaluation of FKBP5 as a cortisol activity biomarker in patients with ACTH-dependent…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The U.S. Patent and Trademark Office has issued a new patent to Strongbridge Biopharma that covers a method of using Recorlev (levoketoconazole), the company’s investigational treatment for endogenous Cushing’s syndrome, to treat people with Cushing’s who also are taking metformin for type 2 diabetes. According to a…

Some 25% of Cushing’s disease patients — or 1 in every 4 — will develop Nelson’s syndrome (NS) after surgery to remove both adrenal glands, while around 1 in every 5 will need pituitary-specific treatment, a study found. Lifelong follow-up is also needed for patients who undergo double adrenal gland…

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…