Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

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…

Everyone probably battles fatigue at some point, but for those with an autoimmune condition, it’s a war. I have granulomatosis with polyangiitis (GPA), and fatigue is one of my biggest foes. I can handle many of the GPA symptoms and medication side effects without too much of an issue.

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…

When I chose my career path in high school, I had no idea how perfect it would be for me. At 19, I was in college pursuing a career in journalism when I was diagnosed with granulomatosis with polyangiitis (GPA) in 2001. I was the editor and designer 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…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Before I was diagnosed with granulomatosis with polyangiitis (GPA) at age 19, I was ready to conquer the world. After the diagnosis, I just wanted to conquer the condition. At first, I was extremely focused on finding out everything I could about GPA. Every detail, every bit of information, and…