News

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

From taking part in a virtual endurance challenge to joining in a virtual cooking class, to watching several speaker presentations, advocates are set to mark Sarcoidosis Awareness Month, observed each April. World Sarcoidosis Day will be celebrated on April 13. Awareness and education are crucial to increasing the recognition,…

April is Sarcoidosis Awareness Month and the Foundation for Sarcoidosis Research (FSR) is holding a virtual Memorial Monday Candlelight Vigil on April 26 to honor those who have died from the rare disease. The hour-long webinar starts at 5 p.m. CST and will feature a special tribute presentation and speakers. The…

Cells of the innate immune system called monocytes can be useful biomarkers to predict the outcomes of people with sarcoidosis, a recent study has found. The findings showed that patients with low levels of blood monocytes at diagnosis were more likely to achieve remission after two years and had…

An association has been found between active sarcoidosis, inflammation, and the presence of low levels of white blood cells, called lymphocytes, that are involved in immune defense. This finding, by researchers at the University of Illinois Chicago (UIC), could be the first step toward the development of a new biomarker…

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…

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…

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…

The Foundation for Sarcoidosis Research is urging adults with sarcoidosis to participate in a new study that will investigate how lymphocytes — one of the main types of immune cells found in the body — control inflammation and if this level of control is part of the reason…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…