News

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

An enzyme called chitotriosidase appears to be a reliable biomarker of sarcoidosis, a study suggests. The activity of this enzyme is correlated with sarcoidosis disease activity, severity, dissemination throughout the body, and may reflect the number of active granulomas within a given patient.

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

The American Thoracic Society has published its first official guidelines for how best to detect and diagnosis sarcoidosis in clinical practice. The guidelines were published in the American Journal of Respiratory and Critical Care Medicine, in an article titled “Diagnosis and Detection of Sarcoidosis. An Official American…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Adiponectin, an anti-inflammatory protein produced by adipose tissue, was seen to be elevated in the blood of people with sarcoidosis in a small study, and may help to ease disease severity.   The finding was…

The National Heart, Lung, and Blood Institute,  part of the National Institutes of Health (NIH), has given a $1.98 million grant to Wayne State University researchers to refine an antibody-based technology that can help to distinguish people with  sarcoidosis from tuberculosis patients and healthy individuals. Sarcoidosis is an…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…

The Foundation for Sarcoidosis Research is partnering with the American Lung Association for its sixth annual effort to raise awareness about sarcoidosis and provide resources for patients, caregivers, and clinicians during Sarcoidosis Awareness Month in April, and specifically to address concerns in the midst of the…