News

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)…

Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also tied to a greater likelihood of ANCA-associated vasculitis (AAV), a study in Japan found. However, these gene variants are not associated with a risk of interstitial lung…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…