News

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…

Ofev (nintedanib) slows clinically relevant disease progression in adults with interstitial lung disease (ILD) associated with systemic sclerosis (SSc-ILD), according to an exploratory analysis of the Phase 3 SENSCIS trial. These new results, combined with the trial’s top-line data, which showed that Ofev significantly slowed the annual rate of…

Elevated blood levels of a protein called galectin-3 can help diagnose people with rheumatic diseases that include scleroderma, rheumatoid arthritis, and systemic lupus erythematosus, a study suggests. The study, “Diagnostic Power of Galectin-3 in Rheumatic Diseases,” was published in the Journal of Clinical Medicine. Chronic inflammation…

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 central to NORD’s mission and history — community…