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July 13, 2020July 13, 2020

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

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 9, 2020July 9, 2020

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

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Blood levels of the soluble urokinase plasminogen activator receptor (suPAR) protein may be a helpful tool for assessing disease severity and prognosis in people with ANCA-associated vasculitis (AAV), a ... Read more

July 2, 2020July 2, 2020

AAV Rare in COPD Patients With AAT Deficiency, Study Finds

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Low levels of the protein alpha-1-antitrypsin (AAT) do not appear to be enough to increase the risk of ANCA-associated vasculitis (AAV) in people with chronic obstructive pulmonary disease (COPD) ... Read more

June 29, 2020June 29, 2020

Eligibility, Outcome Measures Need Uniformity Across AAV Clinical Trials, Review Says

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Clinical trials testing new treatments for people with ANCA-associated vasculitis (AAV) need more uniformity in the patients they recruit and in the outcome measures used for efficacy assessments, a ... Read more

June 25, 2020June 25, 2020

Monash Researcher Awarded Grant to Study Tolerogenic Dendritic Cells

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The Vasculitis Foundation awarded its “Dr. Chris Cox-Marinelli Young Investigator Award” — a one-year research grant totaling $49,822 — to Dragana Odobasic, PhD, a research fellow at Monash University ... Read more

June 23, 2020June 23, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

News, syndicated

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 22, 2020June 22, 2020

Depression More Common in AAV, Linked to Pain, Lower Quality of Life

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Depression is more common in people with primary systemic vasculitides, including in those with ANCA-associated vasculitis (AAV), than in healthy people, a review study has found. Depression in vasculitis patients ... Read more

June 17, 2020June 17, 2020

Cigarette Smoking Linked to Greater Likelihood of MPO-positive AAV

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Cigarette smoking significantly increases the odds of developing ANCA-associated vasculitis (AAV), particularly the disease form with antibodies against the myeloperoxidade (MPO) protein, and this risk is stronger in people ... Read more

June 15, 2020June 15, 2020

Kidney Involvement at AAV Diagnosis Predicts Major Renal Relapses, Study Finds

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People with ANCA-associated vasculitis (AAV) who have kidney involvement when they are diagnosed are more likely to experience major kidney relapses later, a new study shows. The study also ... Read more

June 11, 2020June 11, 2020

Guidelines Given for Rituximab as Maintenance Therapy in 3 AAV Subtypes

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Guidelines for using rituximab as a maintenance therapy in adults with ANCA-associated vasculitis (AAV) were recently published that, in addition to helping physicians with treatment approaches, highlight areas where ... Read more

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