Adding plasma exchange to standard treatment reduces the risk of kidney failure after one year, but does not improve survival in people with ANCA-associated vasculitis (AAV), a review study reports. Plasma exchange was also associated with an increased risk of serious infections — a previously unrecognized effect that may explain…
March, which is Autoimmune Awareness Month, involves sliding into spring, a time of year that coincidentally reflects an autoimmune condition: shifting, transitional, and unpredictable. An autoimmune disease occurs when the body’s immune system attacks itself. The very organs that are supposed to keep the body safe become so overactive…
Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
The body’s complement system — comprised of blood proteins that fight infection — is specifically activated in individuals with microscopic polyangiitis and ANCA-associated vasculitis (AAV) with myeloperoxidase (MPO) antibodies years before a patient’s symptoms begin, new research shows. “These findings support differential pathogenic [disease-causing] mechanisms behind” these two AAV…
Imagine a college student who rarely goes to parties, never drinks to excess, and avoids virtually all risky behavior. Thanks to my health condition, that student was me. True, some young adults are laser-focused on their degree and future career and have an incredible amount of self-discipline. But for the…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
A team of scientists in Europe has developed a novel mouse model of the type of kidney damage that commonly occurs in ANCA-associated vasculitis (AAV), and identified the receptor CXCR4 as a potential target for future therapies. “This model may be a considerable benefit to research aimed at ameliorating…
There’s more to a chronic disease lifestyle than seeing a doctor and taking meds. I’m reminded of this on a daily basis, with dozens of small actions that have become so routine I don’t even think about them as having to do with vasculitis anymore. At first, adjusting to…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
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