Updates

October 21, 2020October 21, 2020
High Relapse Risk Found in AAV Patients With Recurrent or Persistent ANCA Antibodies

Having persistently or recurrently high levels of ANCA antibodies is associated with a greater risk of relapse in people with ANCA-associated vasculitis (AAV), ... Read more
October 20, 2020October 16, 2020
Persevering in a New Reality

After being diagnosed with granulomatosis with polyangiitis, I felt like life as I knew it was over, and a new reality was emerging. When ... Read more
October 19, 2020October 19, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 14, 2020October 14, 2020
ANCA Patients With Kidney Inflammation at High Risk for VTE Blood Clots

People with kidney inflammation due to ANCA-associated vasculitis (AAV) have a high incidence of venous thromboembolism or VTE, a potentially dangerous type of ... Read more
October 13, 2020October 9, 2020
Fighting Back After My Diagnosis

When I began college in the fall of 2000, I expected it to be similar to what my siblings had experienced or what I ... 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

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

Subscribe to our mailing list

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

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Extracellular Vesicles of Neutrophils May Be Blood Biomarkers for AAV

Complement System Overactive in AAV Patients With Active Disease, Study Finds

New Streaming Channel Showcases Rare Disease Films

Plasma Exchange Does Not Improve Survival of Severe AAV Patients, Study Suggests

ANCA Status, B-cell Levels After Rituximab Treatment Predict Relapses, Study Finds

Complement System Activation May Be Linked to Kidney Disease in AAV Patients

Fingolimod May Have Potential as AAV Treatment, Rat Study Indicates

Rituximab-Glucocorticoid Combo Effective for Relapsed AAV Patients in Phase 3 Trial

ChemoCentryx Asks FDA to Approval Oral Avacopan to Treat AAV

Blood suPAR Levels May Help Assess Disease Severity, Prognosis in AAV Patients

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

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

Subscribe to our mailing list

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

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Extracellular Vesicles of Neutrophils May Be Blood Biomarkers for AAV

Complement System Overactive in AAV Patients With Active Disease, Study Finds

New Streaming Channel Showcases Rare Disease Films

Plasma Exchange Does Not Improve Survival of Severe AAV Patients, Study Suggests

ANCA Status, B-cell Levels After Rituximab Treatment Predict Relapses, Study Finds

Complement System Activation May Be Linked to Kidney Disease in AAV Patients

Fingolimod May Have Potential as AAV Treatment, Rat Study Indicates

Rituximab-Glucocorticoid Combo Effective for Relapsed AAV Patients in Phase 3 Trial

ChemoCentryx Asks FDA to Approval Oral Avacopan to Treat AAV

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Blood suPAR Levels May Help Assess Disease Severity, Prognosis in AAV Patients