Updates

April 14, 2021April 14, 2021
Vasculitis UK Funds COVID-19 Vaccine Study

Vasculitis UK has granted £53,364 (about $73,500) to support a research project investigating how people with ANCA-associated vasculitis (AAV) and other vasculitis respond to ... Read more
April 12, 2021April 12, 2021
FDA Committee Seeks Feedback on Avacopan Ahead of Public Meeting

A committee of the U.S. Food and Drug Administration (FDA) is holding a public meeting to discuss the potential approval of avacopan for the ... Read more
April 7, 2021April 7, 2021
Glucocorticoids, Respiratory Disease Raise Risk of Severe COVID-19 in AAV

In patients with systemic vasculitis like ANCA-associated vasculitis (AAV), glucocorticoid use and respiratory disease are linked with severe COVID-19 outcomes, a recent study reports. ... Read more
April 5, 2021April 5, 2021
Alliance Sets Treatment Plans by Consensus for Severe Pediatric AAV

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has established alternative consensus treatment plans for children and adolescents with severe ANCA-associated vasculitis (AAV). These plans, ... Read more
April 1, 2021March 30, 2021
I Celebrate and Grieve on the Anniversary of My Diagnosis

What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April ... 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 underscores ... Read more

Updates

Vasculitis UK Funds COVID-19 Vaccine Study

FDA Committee Seeks Feedback on Avacopan Ahead of Public Meeting

Glucocorticoids, Respiratory Disease Raise Risk of Severe COVID-19 in AAV

Alliance Sets Treatment Plans by Consensus for Severe Pediatric AAV

I Celebrate and Grieve on the Anniversary of My Diagnosis

Subscribe to our mailing list

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

Transplant Medication Found Comparable to Cyclophosphamide in Inducing Remission

Self-antibodies May Appear Years Before AAV Symptom Onset

YKL-40 May Be Helpful Blood Biomarker of AAV Disease Activity

When Long-term Corticosteroid Treatment Lands You in the ‘Predni-zone’

Immune System’s Role AAV, Other Diseases Focus of Grant Award

Timing of Rituximab Infusion May Affect COVID-19 Outcomes in AAV Patients

Why I Stay in Bed Just a Little Longer Each Day

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

AAV Transplant Recipients More Often Die With Functioning Kidney

Relative Benefits, Risks of AAV Induction and Maintenance Therapies Reviewed

It’s a Little More Complicated Than ‘Age Is Just a Number’

Most Vasculitis Patients Willing to Get COVID-19 Vaccine, Survey Finds

FIB-5 Liver Fibrosis Index Shown to Predict Kidney Failure in MPA, GPA

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Becoming Rare: From Diagnosis to Acceptance, to Advocacy

COVID Reinfection Possibly Due to Immunosuppressant Use for AAV

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Avacopan May Be Effective Option to Steroids for AAV, Phase 3 Trial Finds

How an RV Helped Us Solve COVID-19 Travel Dilemmas

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Factors Predicting Serious AAV Infections Found to Vary Over Time

Pharmacists Are My Unsung Heroes of the Medical Profession

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Models May Help in Weighing Risks of Rituximab’s Long-term Use in AAV

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