Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…
News
Kidney transplant recipients, whose kidney failure stemmed from ANCA-associated vasculitis (AAV), have less risk of disease recurrence but a higher risk of dying with a functioning transplant, a recent study suggests. These patients also had a higher risk of dying from complications due to immunosuppression and infection. The study,…
The antibody rituximab is a good alternative to cyclophosphamide for inducing remission in people with ANCA-associated vasculitis (AAV), and is better than azathioprine as a maintenance therapy, researchers reported. These were among the findings from a recent review study that investigated the relative benefits and risks associated with different…
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…
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…
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,…
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