News

In some cases, infections may trigger the development of ANCA-associated vasculitis (AAV) with antibodies against the myeloperoxidase (MPO) protein, but the condition — known as AAV-MPO — typically regresses after the infection is treated, a systemic review finds. However, the use of immunosuppressive medications to treat…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

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…

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…

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…