Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…
In people with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV), central nervous system involvement is associated with more active disease and peripheral nervous system involvement, a recent Chinese study suggests. The study, “Central nervous system involvement in patients with antineutrophil cytoplasmic antibody–associated vasculitis: a study of 29…
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar. William Whitman…
A combination of both blood tests and biopsy (tissue) analysis was better at predicting end-stage renal disease in people with anti-neutrophil cytoplasmic antibody-associated vasculitis (AAV) compared to tissue analysis alone, a study has found. The scientists recommended using the AAV renal…
An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…
Plasma exchange does not improve survival or prevent serious kidney disease in people with ANCA vasculitis, a study found. In addition, lower doses of glucocorticoids — steroid hormones that can ease inflammation — seem to be as effective as standard doses in terms of survival and kidney disease,…
Blood vessels in the kidneys that swell due to an infection can mimic ANCA-associated vasculitis (AAV), making diagnosis and treatment of these two conditions challenging, a case study shows. Identifying and treating infections associated with AAV are essential to helping patients, the researchers…
The bacterium that causes Q fever — an infection usually transmitted to humans by barnyard animals — can trigger anti-neutrophil cytoplasmic autoantibody (ANCA)-associated vasculitis (AAV), a recent case report suggests. Titled “Coxiella burnetii endocarditis as a possible cause of ANCA-associated vasculitis,” the report was published…
The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two years after the European Union decided to relocate the EMA to the Netherlands in the wake of Brexit.
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