Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…
NORD’s Caregiver Respite Program Continues Through Pandemic
InflaRx has completed enrollment in its Phase 2 trial evaluating vilobelimab (IFX-1) for people with ANCA-associated vasculitis (AAV) in Europe. “We are pleased to have met our enrollment goal in the vilobelimab European phase II trial in AAV,” Korinna Pilz, MD, global head of…
“You’re braver than you believe, stronger than you seem, and smarter than you think.” These words are on a plaque that hangs from my medicine shelf. I see them every day as I take my morning and evening medication. They serve as a reminder that I can continue to…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…
The U.S. Food and Drug Administration (FDA) has approved Amgen‘s Riabni (rituximab-arrx), a biosimilar to Rituxan (rituximab), to treat adults with granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA), the two most common subtypes of ANCA-associated vasculitis. The FDA also approved Riabni to treat two blood cancers,…
When someone we know is sick, we tend to tell them to “get well soon.” These words seem polite and social. We say them to anyone who is sick. It has always seemed like the correct phrase to use. But why do those three polite, socially acceptable words feel like…
Patient dosing has begun in a Phase 3 clinical trial investigating the asthma treatment Fasenra (benralizumab) in people with eosinophilic granulomatosis with polyangiitis (EGPA), a subtype of ANCA-associated vasculitis. AstraZeneca, which markets Fasenra, also announced the start of dosing in two other Phase 3 trials: one in…
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The Light at the End of 2020
Here it is, the end of 2020, and what a year it has been. After so many dark and worrisome days in this pandemic, it is quite a relief to see a light at the end of the tunnel. I am overjoyed that COVID-19 vaccinations have begun in the…
People with ANCA-associated vasculitis (AAV) who continue to receive high doses of glucocorticoids for more than six months experience no benefits in terms of survival or relapse rates — but have a much higher risk of infections, a new study suggests. The results showed these patients have a significantly…
I have been dealing with vasculitis symptoms and fatigue for the past 14 holiday seasons. In the early years, I was so worried about disappointing my family and friends that I tried to be my old self and accomplish everything. This behavior always led to a series of disasters.
Recent Posts
- Finding a little light on dark winter days is key with ANCA vasculitis
- Real-world data show high AAV remission rates with Tavneos
- GPA and EGPA overlap features linked to disease severity, survival risk: Study
- Starting a new year with ANCA vasculitis
- New analysis identifies phase-specific relapse risks in AAV treatment