News

April 27, 2020April 27, 2020

Autoimmune COVID-19 Project Seeks Patient Input About Pandemic

News

To better understand the concerns and behaviors of people with autoimmune conditions during the COVID-19 pandemic, the Global Healthy Living Foundation (GHLF) and its digital patient community, CreakyJoints, have launched ... Read more

April 24, 2020April 24, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 20, 2020April 20, 2020

MS Medication Lemtrada May Cause Life-threatening ANCA Vasculitis, Case Report Shows

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The multiple sclerosis treatment Lemtrada (alemtuzumab) can cause severe ANCA-associated vasculitis in rare cases, adding to the growing number of autoimmune complications caused by this therapy, a case report ... Read more

April 13, 2020April 13, 2020

High Steroid Dose, Kidney Problems Tied to Severe Infections in Elderly with AAV

News

High doses of corticosteroids as initial treatment and kidney problems evident at diagnosis significantly increase the likelihood of early and severe infections in elderly people with ANCA-associated vasculitis (AAV), ... Read more

April 2, 2020April 6, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News, syndicated

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

March 30, 2020March 30, 2020

Older Age, Infections Tied to Poor Outcomes in AAV with Lung Hemorrhage

News

Outcomes for people with ANCA-associated vasculitis (AAV) who have an alveolar hemorrhage (bleeding in the lungs’ air sacs) are likely to be worse if they are age 65 or older, ... Read more

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

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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

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