News

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…

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,…

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…

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…

Hypothyroidism, a condition in which the thyroid gland does not produce enough hormones, is not more likely to occur in people with one ANCA-associated vasculitis (AAV) subtype than the others, a study found. But the thyroid disease is associated with the presence of perinuclear ANCA (p-ANCA) antibodies or ANCAs…

Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to generate a better understanding of the extent and severity of nerve problems in people with vasculitis. The “Survey of disability and neuropathy/nerve problems in vasculitis” was launched by Robert…

A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment. Called OPTIONS Vasculitis, the survey is collecting responses from people with AAV, including granulomatosis with polyangiitis and microscopic polyangiitis, as…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…