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…
Becoming Rare: From Diagnosis to Acceptance, to Advocacy
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…
I have a rare illness called eosinophilic granulomatosis with polyangiitis, or EGPA. It causes an increased number of white blood cells known as eosinophils, which can cause significant inflammation in my organs and my small and medium blood vessels. EGPA has affected my heart, lungs, sinuses, gastrointestinal system,…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. 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…
New statistical models could help to predict the risk of relapse and infection following ongoing rituximab treatment in people with ANCA-associated vasculitis (AAV), a study suggests. These models may aid in clinical decisions about the relative risks and benefits of continuing to use rituximab beyond its customary two years…
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