EGPA Symptoms More Pronounced in ANCA-positive Cases

EGPA Symptoms More Pronounced in ANCA-positive Cases

Symptoms differ among people with the rare disorder eosinophilic granulomatosis with polyangiitis (EGPA), depending on whether they test positive or negative for antineutrophil cytoplasmic antibodies (ANCAs). A recent case study revealed that ANCA-positive patients tended to have more blisters, body-wide inflammatory symptoms, and to receive higher doses of oral…

The Unseen Stress of Lab Visits

Today is Lab Day. It’s been highlighted on my calendar for weeks, two words, stern and unavoidable. On the surface, it’s only a quick task: Show up, give samples, leave. But realistically, these visits demand a lot of my mental and physical energy due to the myriad little details. My…

New Guidelines May Help Take Guesswork Out of Treating AAV

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…

Saying Goodbye to My Vasculitis Fear

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…

Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds

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…

Certain Immune Cells May Help Assess AAV Disease Activity

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…

Choosing When and How to Talk About My Disease

“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 Open for 2022 Eurordis Black Pearl Awards

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 Amends Approval Application for Avacopan

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…