Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

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.

People in Poland with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV) are treated according to existing guidelines, and the most common treatment-associated adverse event is infection, according to a nationwide study. The study, “Treatment and its side effects in ANCA-associated vasculitides – Study based on POLVAS registry…

An elderly woman was diagnosed with the granulomatosis with polyangiiti (GPA) subtype of ANCA-associated vasculitis (AAV) after being misdiagnosed with pneumonia, illustrating the challenges in diagnosing this condition, according to a case report.  All types of AAV should be in the differential diagnosis for all…