Author Archives: Marisa Wexler MS

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…

Having an ultrasound of the neck may be useful for diagnosing certain cases of sarcoidosis — and for ruling out other similar conditions, a new study highlights. In fact, statistical models based on ultrasound measures used in the study were shown to accurately identify 90% of patients with and…

INOpulse, a device that administers inhaled nitric oxide, significantly improved blood flow parameters in a small proof-of-concept clinical trial conducted in people with pulmonary hypertension associated with sarcoidosis (PH-Sarc). “We are pleased with the positive top-line data from this proof-of-concept study,” Naseem Amin, MD, chairman of the board…

Most people living with sarcoidosis are overall satisfied with their health insurance provider and are not considering changing their medication, according to a U.S.-based survey conducted by Sarcoidosis News. However, roughly 1 in 3 survey respondents were dissatisfied with their quality of life, and more than a quarter…

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…

Xentria is seeking regulatory approval to begin clinical trials to test XTMAB-16, its investigational TNF-alpha inhibitor for the treatment of sarcoidosis. Xentria submitted the request — in the form of an investigational new drug (IND) application — to the U.S. Food and Drug Administration (FDA) on Feb. 26. The…

Although uncommon, some people with cancer will develop granulomas, the clumps of immune cells that are a hallmark of sarcoidosis — and those who do are more likely to have better survival outcomes, a new study reports. The study, “Presence of concurrent sarcoid-like granulomas indicates better…

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 organizations and research programs to help people with rare diseases.  “The RareLaunch program is…

The World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) and the Foundation for Sarcoidosis Research (FSR) have recognized the University of Miami Sarcoidosis Program as a Sarcoidosis Center of Excellence. This recognition is granted to multidisciplinary teams of medical professionals, who share a specialized facility that…

Relative to the general population, people with sarcoidosis are at higher long-term risk of heart failure and other heart problems, a large Danish data study suggests. Its researchers recommend regular monitoring of cardiac issues across this patient group. The study, “Long-Term Adverse Cardiac Outcomes in Patients With…