Updates

May 25, 2020May 25, 2020
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 ... Read more
May 19, 2020May 19, 2020
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together ... Read more
May 18, 2020May 18, 2020
Request for FDA Approval of Avacopan Likely by Mid-year, ChemoCentryx Says

ChemoCentryx is planning to file a request with the U.S. Food and Drug Administration (FDA) by mid-year seeking approval of avacopan (CCX168) as a treatment for ... Read more
May 12, 2020May 12, 2020
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare ... Read more
May 11, 2020May 11, 2020
Hydralazine Causes Rare Case of AAV with Severe Respiratory, Kidney Failure, Study Reports

A common blood pressure medication called hydralazine may cause ANCA-associated vasculitis (AAV), with a severe impact on both lungs and kidneys in rare ... Read more

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January 11, 2018

Early Diagnosis of AAV Symptoms Decreases Risk of Renal Damage, Mortality

News

A retrospective study has found an association between the length of prodromal phase – where patients experience non-specific symptoms before more specific disease signs develop – and mortality in antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) patients. This finding ... Read more

Updates

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Request for FDA Approval of Avacopan Likely by Mid-year, ChemoCentryx Says

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Hydralazine Causes Rare Case of AAV with Severe Respiratory, Kidney Failure, Study Reports

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AAV Linked to Inflammation, Thickening of Brain Membranes in Case Study

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Autoimmune COVID-19 Project Seeks Patient Input About Pandemic

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

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

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

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

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

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

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

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

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

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

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

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

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

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

AAV That Involves Central Nervous System Linked to More Active Disease, Chinese Study Suggests

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Study Recommends AAV Renal Risk Score to Predict Serious Kidney Disease in Patients

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Plasma Exchange Doesn’t Prolong Survival in ANCA Vasculitis, Study Finds

Early Diagnosis of AAV Symptoms Decreases Risk of Renal Damage, Mortality

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Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Request for FDA Approval of Avacopan Likely by Mid-year, ChemoCentryx Says

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Hydralazine Causes Rare Case of AAV with Severe Respiratory, Kidney Failure, Study Reports

Subscribe to our mailing list

AAV Linked to Inflammation, Thickening of Brain Membranes in Case Study

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

Autoimmune COVID-19 Project Seeks Patient Input About Pandemic

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

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

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

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

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

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

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

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

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

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

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

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

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

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

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

AAV That Involves Central Nervous System Linked to More Active Disease, Chinese Study Suggests

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Study Recommends AAV Renal Risk Score to Predict Serious Kidney Disease in Patients

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Plasma Exchange Doesn’t Prolong Survival in ANCA Vasculitis, Study Finds

Pin It on Pinterest