News

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…

Outcomes for people with ANCA-associated vasculitis (AAV) who have an alveolar hemorrhage (bleeding in the lungs’ air sacs) are likely to be worse if they are age 65 or older, need respiratory support, or develop infections, a study reports. The study, “Alveolar haemorrhage in ANCA-associated vasculitis: Long-term outcome and…

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) —…