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
November 10, 2020November 6, 2020
The War Against Fatigue
(In)visible Journey – a Column by Sandra Ross, Columns
Everyone probably battles fatigue at some point, but for those with an autoimmune condition, it’s a war. I have ... Read more
November 9, 2020November 9, 2020
Oral Therapy Avacopan for AAV Now Under Regulatory Review in Europe
News
The European Medicines Agency (EMA) has agreed to review Vifor Pharma and ChemoCentryx’s application requesting the approval of ... Read more
November 3, 2020October 30, 2020
I’ve Been Blessed With My Career Path
(In)visible Journey – a Column by Sandra Ross, Columns
When I chose my career path in high school, I had no idea how perfect it would be for ... Read more
November 2, 2020November 2, 2020
NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits
News, syndicated
The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in ... Read more
October 28, 2020October 28, 2020
UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
News, syndicated
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will ... 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

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, and in extending time until a disease relapse, new data from a ... 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 inflammation — may help identify those ANCA-associated vasculitis (AAV) patients ... Read more

November 10, 2020November 6, 2020

The War Against Fatigue

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

Everyone probably battles fatigue at some point, but for those with an autoimmune condition, it’s a war. I have granulomatosis with polyangiitis (GPA), and fatigue is one of my ... Read more

November 9, 2020November 9, 2020

Oral Therapy Avacopan for AAV Now Under Regulatory Review in Europe

News

The European Medicines Agency (EMA) has agreed to review Vifor Pharma and ChemoCentryx’s application requesting the approval of avacopan to treat granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA), ... Read more