News

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to XTMAB-16, Xentria’s investigational TNF-alpha inhibitor for the treatment of sarcoidosis. The designation is given to candidate therapies with the potential to be safe…

Three months of treatment with the common, generic antibiotic azithromycin safely reduced the number of coughs and cough severity, and improved the quality of life in adults with pulmonary sarcoidosis, a small, exploratory study concluded.  The findings…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

The Foundation for Sarcoidosis Research (FSR) is launching a series of mindfulness and meditation workshops — all as free, live webinars — to support people with sarcoidosis and those caring for them. The workshop series will focus on discussing the physical and mental benefits of meditation and…

Corticosteroids, a type of anti-inflammatory medication, is the most-prescribed treatment for people with sarcoidosis, a study in a U.S. population shows. Also, the study found, a small percentage of these patients are receiving biological therapies (those using compounds derived from living organisms), despite not being approved in…

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…

Testicular sperm aspiration for in vitro fertilization (IVF) is a successful strategy to overcome infertility associated with methotrexate– and steroid-resistant testicular sarcoidosis, a case study shows. The report documents a case of a man who, within two years of a sarcoidosis diagnosis, showed complete azoospermia (absence…