The two COVID-19 vaccines that recently received emergency approval from the U.S. and other worldwide regulatory agencies are expected to pose little risk to the rare disease community, including to patients with compromised immune systems or those participating in gene therapy studies. That was the message of a recent…
The Vasculitis Foundation is urging people living with vasculitis to tell their personal stories on collectable baseball-type cards named “Patient Heroes.” This inaugural initiative will be part of this year’s Vasculitis Awareness Month events, which runs each May. On the Patient Heroes collectable cards, people living with this rare…
Battling an autoimmune condition is difficult enough, but when my own brain decides to work against me, it can be even more challenging. Anxiety is one of my biggest foes, and while I have gotten better at handling it, I have yet to conquer it. I went to my…
A higher ratio of disease-inducing neutrophils to lymphocytes at diagnosis may help predict severe infections and mortality in people with ANCA-associated vasculitis (AAV) taking immunosuppression therapy, a study suggests. The study, “The…
This week, my eosinophilic granulomatosis with polyangiitis (EGPA) decided to remind me that it had not gone away and was ever-present. I could feel my symptoms becoming more problematic. I tried to ignore them. The peripheral neuropathy in my feet became more noticeable and interrupted my sleep. My asthma…
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…
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,…
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