News

November 26, 2020November 26, 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 23, 2020November 23, 2020

RedHill Launches Trial to Test RHB-204 for Bronchiectasis Plus MAC Lung Infections

News

RedHill Biopharma has launched a Phase 3 clinical trial to evaluate the safety and effectiveness of its investigational oral therapy RHB-204 in adults with bronchiectasis who have lung infections ... Read more

November 20, 2020November 20, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

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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 16, 2020November 16, 2020

EMA Grants PRIME Status to Brensocatib for Treating Non-CF Bronchiectasis

News

The European Medicines Agency (EMA) has given the designation of priority medicines, or PRIME, to Insmed’s brensocatib for the treatment of non-cystic fibrosis bronchiectasis (NCFBE). A PRIME designation is ... Read more

November 13, 2020November 13, 2020

Bronchiectasis Worsens Lung Function, Quality of Life in Severe Asthma, Study Finds

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People with severe asthma have worse lung function, lower quality of life, and more exacerbations if they also have bronchiectasis, an Italian study found. The study, “Clinical features associated ... Read more

November 9, 2020November 9, 2020

Being Underweight Linked to Poorer Lung Function in Bronchiectasis Patients in US Study

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Being underweight is linked to poorer lung function in people with bronchiectasis, but not to increased risk of hospitalization or death, a new U.S. study indicates. The study, “Nutrition ... Read more

November 6, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

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The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 2, 2020November 2, 2020

South Korean Tuberculosis Control Program May Have Contributed to Lower Bronchiectasis Rates

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The number of new cases of bronchiectasis in South Korea gradually decreased from 2005 to 2013, but remained higher than in Western countries, a study shows. Notably, among bronchiectasis’ ... Read more

October 30, 2020October 30, 2020

Arikayce Approved in Europe for MAC Lung Infections in Non-CF Adults

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The European Commission has approved Arikayce — liposomal amikacin for inhalation — as the first treatment for lung infections caused by Mycobacterium avium complex (MAC), a type of non-tuberculous ... Read more

October 29, 2020October 29, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more