News

November 9, 2020November 9, 2020

Oral Therapy Avacopan for AAV Now Under Regulatory Review in Europe

News

The European Medicines Agency (EMA) has agreed to review Vifor Pharma and ChemoCentryx’s application requesting the approval of avacopan to treat granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA), ... Read more

November 2, 2020November 2, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

October 28, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

News, syndicated

A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more

October 26, 2020October 26, 2020

AAV Patients Not at Greater COVID-19 Risk, But Care Is Disrupted Due to Pandemic

News

People with ANCA-associated vasculitis (AAV) have a similar incidence of COVID-19 as the general population, but the ongoing pandemic has significantly disrupted routine medical care for patients with this ... Read more

October 21, 2020October 21, 2020

High Relapse Risk Found in AAV Patients With Recurrent or Persistent ANCA Antibodies

News

Having persistently or recurrently high levels of ANCA antibodies is associated with a greater risk of relapse in people with ANCA-associated vasculitis (AAV), a recent study has found. In ... Read more

October 19, 2020October 19, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more

October 14, 2020October 14, 2020

ANCA Patients With Kidney Inflammation at High Risk for VTE Blood Clots

News

People with kidney inflammation due to ANCA-associated vasculitis (AAV) have a high incidence of venous thromboembolism or VTE, a potentially dangerous type of blood clot, a new study shows. ... Read more

October 12, 2020October 12, 2020

Heat Shock Proteins in Kidneys Linked to Poorer Outcomes in AAV Patients

News

A group of proteins that modulate immune responses, called heat shock proteins (HSPs), are significantly elevated in the kidneys of people with ANCA-associated vasculitis (AAV), and their levels are ... Read more

October 7, 2020October 7, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

September 30, 2020September 30, 2020

Plasma Exchange Shows Little Benefit in AAV Treatment, Meta-analysis Finds

News

Adding plasma exchange to immune-suppressing treatment does not significantly improve clinical outcomes in people with ANCA-associated vasculitis (AAV), a new meta-analysis indicates. The analysis, “The role of plasma exchange ... Read more