The American College of Rheumatology and the Vasculitis Foundation have published new guidelines to improve the treatment and management of systemic vasculitis, a group of inflammatory disorders that includes ANCA-associated vasculitis (AAV). The rarity of these disorders can make them challenging to diagnose and treat. The new…
We were 600 feet above sea level as we traversed a dormant volcano rim in Hawaii. We followed a narrow ledge with nothing on the trail to guide us. My friend, a Honolulu resident and avid hiker, told me that if we got lost, the only safety recourse was to…
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology company, to help lower out-of-pocket prescription costs for specialty pharmacy patients. Medications attained through specialty pharmacies are those used to treat rare and chronic conditions in the U.S., and are often extremely costly. For…
A blood parameter called large unstained cell count or LUC – which measures the numbers of certain activated immune cells – appears to associate with higher ANCA-associated vasculitis (AAV) disease activity, a small study found. These results, when combined with the findings of previous, larger-scale studies, show that “LUC…
“Do you want to get dinner this weekend?” It’s a simple question with a complex answer for a chronic disease patient. What time will we eat? At which restaurant? Does the menu suit my needs? Do I have the budget for it this month? Will I have the spoons…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
ChemoCentryx has filed an amendment to its application seeking approval of avacopan, an investigational therapy for the treatment of ANCA-associated vasculitis (AAV). The filing addresses the issues raised by an advisory committee of independent medical experts during a recent meeting with the U.S. Food and Drug…
I’m in the gym, on minute 17 of the stair-stepper machine, exhausted and desperately watching the timer count up to 20. That’s today’s goal: nonstop stepping on levels five and six for 20 minutes. This session is bookended by a 10-minute treadmill warmup and cooldown to get my heart rate…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
When the weather is nice, I tend to forget I’m sick. The sun is shining, the yard is green and inviting, and I don’t even have to put on shoes to enjoy it all. (In fact, according to the grounding technique, it might be healthier not to!) There are…
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