News

March 27, 2020March 27, 2020

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

News

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. ... Read more

March 23, 2020March 23, 2020

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

News

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see ... Read more

March 23, 2020March 23, 2020

AAV Patients at 7 Times Higher Risk for Infections, Study Finds

News

People with ANCA-associated vasculitis have about seven times the risk of developing an infection compared with individuals in the general population, a study found. The study, “Characterizing infection in ... Read more

March 18, 2020March 18, 2020

Omitting Rituxan Dose Does Not Affect AAV Relapse Rates, Analysis Suggests

News

Omitting one dose of Rituxan (rituximab) in a previously tested, tailored treatment regimen did not impact the short-term relapse-free rate of people with ANCA-associated vasculitis (AAV), a post-hoc analysis ... Read more

March 11, 2020March 11, 2020

AAV Does Not Raise Healthcare Use, Mortality in Goodpasture’s Syndrome, Study Says

News

ANCA-associated vasculitis does not increase healthcare resource utilization or in-hospital mortality rates in patients with Goodpasture’s syndrome, a study reports. The study, “Impact of ANCA-Associated Vasculitis on Outcomes of ... Read more

March 9, 2020March 9, 2020

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

News

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still ... Read more

March 9, 2020March 9, 2020

GPA Patients Undergo More Hospitalizations With Worse Outcomes, US Study Finds

News

Patients with granulomatosis with polyangiitis, a subtype of ANCA-associated vasculitis (AAV), have a higher rate of hospitalizations than the general population, a U.S. study reports. Their hospitalizations were also ... Read more

March 5, 2020March 5, 2020

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

News

In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the ... Read more

March 4, 2020March 4, 2020

Lung Involvement Increases Relapse Risk in Chinese Patients With MPO-AAV, Study Says

News

Lung involvement increases the risk for both induction therapy resistance and disease relapse in ANCA-associated vasculitis (AAV) patients with autoantibodies against myeloperoxidase, a Chinese study suggests. High levels of ... Read more

March 3, 2020March 3, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

News

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, ... Read more

Pin It on Pinterest