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…

A common blood pressure medication called hydralazine may cause ANCA-associated vasculitis (AAV), with a severe impact on both lungs and kidneys in rare instances, a case report shows. The medication has been widely associated with AAV, but reports of severe lung and kidney injury are uncommon. In such…

A rare case of ANCA-associated vasculitis (AAV) causing thickening of the dura mater — a protective membrane of the central nervous system (CNS) — was found in a person previously treated for ANCA-associated interstitial lung disease. The case report was detailed in the study, “A…

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…

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…

To better understand the concerns and behaviors of people with autoimmune conditions during the COVID-19 pandemic, the Global Healthy Living Foundation (GHLF) and its digital patient community, CreakyJoints, have launched a longitudinal study for those with vasculitis, arthritis, multiple sclerosis, and inflammatory bowel disease…

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…

The multiple sclerosis treatment Lemtrada (alemtuzumab) can cause severe ANCA-associated vasculitis in rare cases, adding to the growing number of autoimmune complications caused by this therapy, a case report shows. The study, “ANCA-associated life-threatening systemic vasculitis after alemtuzumab treatment for multiple sclerosis,” was…

High doses of corticosteroids as initial treatment and kidney problems evident at diagnosis significantly increase the likelihood of early and severe infections in elderly people with ANCA-associated vasculitis (AAV), research shows. These infections are associated with a higher risk of death. The study, “Initial high-dose …

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…