More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…
Serious infections occur more frequently in people with anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis who have higher disease activity at diagnosis, a real-world, long-term study showed. Moreover, most serious infections occur during the first year after the ANCA vasculitis diagnosis, the study found.
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…
Vasculitis UK has granted £53,364 (about $73,500) to support a research project investigating how people with ANCA-associated vasculitis (AAV) and other vasculitis respond to COVID-19 vaccines. Led by Lucy Fairclough, PhD, an associate professor at Nottingham University, in the U.K., the project seeks to…
A committee of the U.S. Food and Drug Administration (FDA) is holding a public meeting to discuss the potential approval of avacopan for the treatment of ANCA-associated vasculitis (AAV). During the meeting of the FDA’s Arthritis Advisory Committee, members will review safety and efficacy data of Chemocentryx’s…
In patients with systemic vasculitis like ANCA-associated vasculitis (AAV), glucocorticoid use and respiratory disease are linked with severe COVID-19 outcomes, a recent study reports. “Together with reports of other cohorts exposed to immunosuppressant medication, these data could inform future public health guidance for individuals…
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has established alternative consensus treatment plans for children and adolescents with severe ANCA-associated vasculitis (AAV). These plans, which compare two therapies for induction and maintenance of remission in pediatric…
What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking. Before my diagnosis, a few medical professionals…
As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…
People with ANCA-associated vasculitis (AAV) who receive mycophenolate mofetil (MMF) as a remission induction therapy have similar remission rates as those given cyclophosphamide (CYC), an analysis of eight published studies has found. The study, “The Role of Mycophenolate…
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