The majority of people with ANCA-associated vasculitis (AAV) and other forms of vasculitis plan to get the COVID-19 vaccine, and about one-third has already received at least one dose, a recent survey shows. Yet, about 23% of respondents said they are unsure or not planning to receive a…
Measuring liver scarring at diagnosis, using the FIB-5 liver fibrosis index, can help predict kidney failure in people with the two most common subtypes of ANCA-associated vasculitis (AAV), a study reports. Yet, this index was unable to predict mortality from any cause in these patients — who had either…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
Rare is steak cooked to an internal temperature of 120 to 130 F. Rare are opals found in the Nevada desert. Rare is finding out who left the toilet paper roll empty. Rare is not me. I have spent my life trying to be typical and to fit…
A woman was potentially reinfected with SARS-CoV-2 — the virus that causes COVID-19 — while on immunosuppressive therapy for ANCA-associated vasculitis (AAV). This case suggests that immunosuppressed patients are at risk of viral reinfection or persistence, likely because their immune system…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…
Use of avacopan can increase remission rates and improve kidney function in people with ANCA-associated vasculitis (AAV), while limiting the toxicity associated with standard steroid therapy, according to results from a Phase 3 clinical trial. Top-line data from the ADVOCATE trial, which opened on March 15, 2017, and concluded on…
Last summer, my husband and I bought an RV to drive across the U.S. to see my dad. My mom died last spring, and we hadn’t yet traveled to visit my father in Florida, because of COVID-19. I really needed to hold my dad’s hand and hug him. I…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
The risk factors that predict serious infections in people with ANCA-associated vasculitis (AAV) vary with time, a study found. Factors associated with early infection include age and admission to an intensive care unit, whereas kidney function is the most important risk factor for late infections, the investigators said. The…
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