The War Against Fatigue

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…

People with ANCA-associated vasculitis (AAV) have a similar incidence of COVID-19 as the general population, but the ongoing pandemic has significantly disrupted routine medical care for patients with this autoimmune disease, a study found. Some AAV patients had therapies postponed or had healthcare visits rescheduled; 16% had less…

Having persistently or recurrently high levels of ANCA antibodies is associated with a greater risk of relapse in people with ANCA-associated vasculitis (AAV), a recent study has found. In patients whose ANCA antibodies target the myeloperoxidase (MPO) protein, a recurrent ANCA pattern was also significantly associated with…

After being diagnosed with granulomatosis with polyangiitis, I felt like life as I knew it was over, and a new reality was emerging. When I was diagnosed, I was a 19-year-old sophomore in college. I missed the last half of fall semester, and it was possible that I would…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…