News

A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment. Called OPTIONS Vasculitis, the survey is collecting responses from people with AAV, including granulomatosis with polyangiitis and microscopic polyangiitis, as…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also tied to a greater likelihood of ANCA-associated vasculitis (AAV), a study in Japan found. However, these gene variants are not associated with a risk of interstitial lung…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

Changes in autoantibodies that target the protein PR3 in people with ANCA-associated vasculitis (AAV) may help predict sustained remission following treatment, and eventual disease relapses, a study found. The research also shows that the ALBIA method, which is becoming widely…

Avacopan is superior to prednisone at improving kidney health in people with ANCA-associated vasculitis (AAV) and poor kidney function, and in extending time until a disease relapse, new data from a Phase 3 trial show. These findings were recently shared at ACR Convergence 2020, the virtual annual meeting of…

Measuring the level of C-reactive protein monomer (mCRP) — a protein that increases in response to tissue damage and inflammation — may help identify those ANCA-associated vasculitis (AAV) patients who have cardiovascular disease, a recent study found.  The study, “The plasma level of…

The European Medicines Agency (EMA) has agreed to review Vifor Pharma and ChemoCentryx’s application requesting the approval of avacopan to treat granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA), the companies announced in a press release. GPA and MPA are two types of…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases.  “The RareLaunch program is…