News

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) —…

People with ANCA-associated vasculitis have about seven times the risk of developing an infection compared with individuals in the general population, a study found. The study, “Characterizing infection in anti-neutrophil cytoplasmic antibody–associated vasculitis: results from a longitudinal, matched-cohort data linkage study,” was published in the journal Rheumatology.

Omitting one dose of Rituxan (rituximab) in a previously tested, tailored treatment regimen did not impact the short-term relapse-free rate of people with ANCA-associated vasculitis (AAV), a post-hoc analysis of a Phase 3 trial showed. The findings suggest this particular dose could be eliminated from the…

ANCA-associated vasculitis does not increase healthcare resource utilization or in-hospital mortality rates in patients with Goodpasture’s syndrome, a study reports. The study, “Impact of ANCA-Associated Vasculitis on Outcomes of Hospitalizations for Goodpasture’s Syndrome in the United States: Nationwide Inpatient Sample 2003–2014,” was published in the journal Medicina.

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new…

Patients with granulomatosis with polyangiitis, a subtype of ANCA-associated vasculitis (AAV), have a higher rate of hospitalizations than the general population, a U.S. study reports. Their hospitalizations were also linked to higher morbidity, mortality, and costs. The study, “Inpatient epidemiology and economic burden of granulomatosis with polyangiitis: a…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…