Author Archives: Marisa Wexler MS

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…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…

People with sarcoidosis are being asked to donate blood samples and information related to their disease to help the Oklahoma Medical Research Foundation (OMRF) further its work into how sarcoidosis develops and progresses. Healthy individuals, serving as a control group, are also asked to take part. Participants will be asked…

People with sarcoidosis who have impaired lung function seem to be at greater risk for severe COVID-19 disease, a new study suggests. The study, “Moderate or Severe Impairment in Pulmonary Function is Associated with Mortality in Sarcoidosis Patients Infected with SARS‑CoV‑2,” was published in the journal …

A grant from the Foundation for Sarcoidosis Research (FSR) will fund the development of a new mouse model of sarcoidosis, which could aid in understanding how the disease develops and ultimately serve as a platform for testing potential treatments. The FSR’s Small Grant program provides up to $25,000…