Updates

November 23, 2020November 23, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their ... Read more
November 20, 2020November 18, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 18, 2020November 18, 2020
Monitoring Autoantibodies in AAV Helps Predict Remission, Relapse, Study Finds

Changes in autoantibodies that target the protein PR3 in people with ANCA-associated vasculitis (AAV) may help predict sustained remission following treatment, and eventual ... Read more
November 16, 2020November 16, 2020
Oral Avacopan Improves Kidney Function and Delays Relapse, Trial Reports

Avacopan is superior to prednisone at improving kidney health in people with ANCA-associated vasculitis (AAV) and poor kidney function, and in extending time until ... Read more
November 11, 2020November 11, 2020
Measuring mCRP Levels May Help Identify Cardiovascular Disease in AAV Patients

Measuring the level of C-reactive protein monomer (mCRP) — a protein that increases in response to tissue damage and inflammation — may help identify ... 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

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Monitoring Autoantibodies in AAV Helps Predict Remission, Relapse, Study Finds

Oral Avacopan Improves Kidney Function and Delays Relapse, Trial Reports

Measuring mCRP Levels May Help Identify Cardiovascular Disease in AAV Patients

Subscribe to our mailing list

The War Against Fatigue

Oral Therapy Avacopan for AAV Now Under Regulatory Review in Europe

I’ve Been Blessed With My Career Path

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

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

Diving Into a Sea of Denial

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

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

Persevering in a New Reality

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

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

Fighting Back After My Diagnosis

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

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

The Long, Blurry Days Leading Up to My Diagnosis

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

The Beginning of My Invisible Journey

B-cells Marker Levels May Predict Complete Responses to Rituximab in GPA, MPA

Exagen Launches Test for Rapid Diagnosis, Differentiation of AAV Subtypes

FDA to Consider Avacopan as Potential Oral Treatment of AAV

20S-proteasome May Be Useful Biomarker of AAV Disease Activity

AAV Carries High Healthcare Costs, Italian Study Finds

Muscle Biopsies Could Be Useful in AAV Diagnosis, Study Asserts

Organ Involvement in EGPA Patients Impacted by ANCA Status, Review Finds

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

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