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…
People with kidney inflammation due to ANCA-associated vasculitis (AAV) have a high incidence of venous thromboembolism or VTE, a potentially dangerous type of blood clot, a new study shows. However, treatment with statins — cholesterol-lowering medications — may significantly reduce patients’ VTE risk, researchers say. The…
When I began college in the fall of 2000, I expected it to be similar to what my siblings had experienced or what I had seen on TV: making friends, having fun, enjoying a massive amount of freedom, and even going to class. I didn’t expect to fight an illness…
A group of proteins that modulate immune responses, called heat shock proteins (HSPs), are significantly elevated in the kidneys of people with ANCA-associated vasculitis (AAV), and their levels are associated with poorer kidney function and organ survival, a multi-year study found. These…
Get regular updates to your inbox.