News

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Treatment with ChemoCentryx’s investigational therapy avacopan can improve kidney function in people with ANCA-associated vasculitis to a greater extent than steroids, especially among individuals with advanced kidney disease, clinical trial data show. The data were presented at the annual meeting of the European Renal Association –…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Vasculitis UK has awarded a total of £200,000 (about $283,000) in four grants to research projects mostly focused on the development of new therapeutic approaches and biomarkers for ANCA-associated vasculitis (AAV) and other vasculitis. All grants, each about £50,000 (about $70,800), were given to researchers at academic institutions…

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in Europe living with rare diseases are left behind by the start of a new decade. As part of…

The Vasculitis Foundation‘s Excellence in Diagnostics (V-RED) award program — which has grown into an awareness campaign — is this year honoring an endocrinologist, a primary care physician, and a critical care doctor. Launched in 2014, the V-RED awards seek to recognize medical providers globally who made critical…

About one-third of patients with ANCA-associated vasculitis (AAV) or other forms of vasculitis postponed at least one of their healthcare visits during the first months of the COVID-19 pandemic, but most continued adhering to treatment, a survey reveals. Moreover, patients with vasculitis are complying with advice to stay at…

Being underweight at diagnosis, with a low body mass index (BMI), is associated with a significantly greater risk of severe infections in older adults with microscopic polyangiitis (MPA), a recent study in Japan reports. Other significant predictors of severe infection included…

A group of European experts have drafted a series of recommendations for the use of immunosuppressive therapies, such as rituximab, and the timing for COVID-19 vaccination in people with ANCA-associated vasculitis (AAV). Most treatment plans will require a tailored approach, and a likely delay in immunosuppressive doses during vaccination,…