December 16, 2020December 16, 2020
Hypothyroidism More Likely in AAV Patients With Certain Autoantibodies, Study Finds
News
Hypothyroidism, a condition in which the thyroid gland does not produce enough hormones, is not more likely to occur ... Read more
December 14, 2020December 14, 2020
Vasculitis UK Opens Online Survey to Gauge Extent, Severity of Nerve Problems
News
Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to ... Read more
December 10, 2020December 9, 2020
I Came, I Saw, I’m Conquering Vasculitis
Columns, Veni, Vidi, Vascie – a Column by Suzanne DePaolis
“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this ... Read more
December 7, 2020December 7, 2020
Survey Seeks to Better Understand How AAV Patients Make Treatment Decisions
News
A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how ... Read more
December 1, 2020November 25, 2020
Battling GPA for Half My Life
(In)visible Journey – a Column by Sandra Ross, Columns
I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On ... Read more
November 30, 2020November 30, 2020
NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting
News, syndicated
To empower and equip members of the rare disease community to engage state leaders in matters of importance to ... Read more
November 25, 2020November 25, 2020
IPF Risk Genes Linked to AAV in Study, But Not to AAV-associated Lung Disease
News
Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also ... Read more
November 23, 2020November 23, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
News, syndicated
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with ... Read more
November 20, 2020November 18, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
News, syndicated
Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how ... Read more
November 18, 2020November 18, 2020
Monitoring Autoantibodies in AAV Helps Predict Remission, Relapse, Study Finds
News
Changes in autoantibodies that target the protein PR3 in people with ANCA-associated vasculitis (AAV) may help predict sustained ... Read more
November 16, 2020November 16, 2020
Oral Avacopan Improves Kidney Function and Delays Relapse, Trial Reports
News
Avacopan is superior to prednisone at improving kidney health in people with ANCA-associated vasculitis (AAV) and poor kidney function, ... Read more
November 11, 2020November 11, 2020
Measuring mCRP Levels May Help Identify Cardiovascular Disease in AAV Patients
News
Measuring the level of C-reactive protein monomer (mCRP) — a protein that increases in response to tissue damage and ... Read more

December 16, 2020December 16, 2020

Hypothyroidism More Likely in AAV Patients With Certain Autoantibodies, Study Finds

News

Hypothyroidism, a condition in which the thyroid gland does not produce enough hormones, is not more likely to occur in people with one ANCA-associated vasculitis (AAV) subtype than the ... Read more

December 14, 2020December 14, 2020

Vasculitis UK Opens Online Survey to Gauge Extent, Severity of Nerve Problems

News

Vasculitis UK is urging patients with such autoimmune disorders to complete an online research survey that is seeking to generate a better understanding of the extent and severity of ... Read more

December 10, 2020December 9, 2020

I Came, I Saw, I’m Conquering Vasculitis

Columns, Veni, Vidi, Vascie – a Column by Suzanne DePaolis

“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this after a victorious battle. Having a rare illness is a ... Read more

December 7, 2020December 7, 2020

Survey Seeks to Better Understand How AAV Patients Make Treatment Decisions

News

A survey is seeking people with ANCA-associated vasculitis (AAV) around the world to help researchers better understand how patients make decisions about treatment. Called OPTIONS Vasculitis, the survey is ... Read more

December 1, 2020November 25, 2020

Battling GPA for Half My Life

(In)visible Journey – a Column by Sandra Ross, Columns

I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On Nov. 16, 2001, I was near death when I was ... Read more

November 30, 2020November 30, 2020

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

News, syndicated

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders ... Read more

November 25, 2020November 25, 2020

IPF Risk Genes Linked to AAV in Study, But Not to AAV-associated Lung Disease

News

Genetic variations in the TERT and DSP genes, previously associated with an increased risk of idiopathic pulmonary fibrosis (IPF), are also tied to a greater likelihood of ANCA-associated vasculitis (AAV), a study ... Read more

November 23, 2020November 23, 2020

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

News, syndicated

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 health and well-being, according to ... Read more

November 20, 2020November 18, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

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 patient registry. They shared about ... Read more

November 18, 2020November 18, 2020

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

News

Changes in autoantibodies that target the protein PR3 in people with ANCA-associated vasculitis (AAV) may help predict sustained remission following treatment, and eventual disease relapses, a study found. The ... Read more