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May 17, 2018May 17, 2018

‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35

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The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. ... Read more

May 16, 2018May 16, 2018

#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say

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The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in ... Read more

May 8, 2018May 8, 2018

SmartVest System Leads to Long-term Benefits for Bronchiectasis Patients, Study Shows

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Long-term use of Electromed’s SmartVest Airway Clearance System reduces bronchiectasis-related exacerbations and improves patients’ quality of life, a recent study shows. SmartVest’s long-term benefits were reported in the study, ... Read more

May 3, 2018May 3, 2018

International Biophysics’ AffloVest Airway Clearance Vest Awarded New US Patents

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Texas-based International Biophysics recently received two new U.S. patents for its AffloVest High Frequency Chest Wall Oscillation (HFCWO) vest, a type of mobile airway clearance therapy for severe respiratory diseases ... Read more

May 2, 2018May 2, 2018

#ECRD2018 – Patient Access and Collaboration Focus of Eurordis Meeting May 10-12

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At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for ECRD 2018, the 9th European Conference on Rare Diseases and Orphan ... Read more

April 26, 2018April 26, 2018

Bronchiectasis Associated with Acute COPD Exacerbations, Study Shows

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Bronchiectasis is associated with frequent chronic obstructive pulmonary disease (COPD) exacerbations and hospitalizations, a recent study shows. The study, “Relationship between the presence of bronchiectasis and acute exacerbation in ... Read more

April 17, 2018April 17, 2018

Insmed Research Award Created for Non-Tuberculosis Mycobacteria Lung Disease Projects

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The American Thoracic Society Foundation has created a $50,000 research award for projects aimed at developing better prevention, diagnosis, or treatment approaches for non-tuberculous mycobacteria (NMT) lung disease. It calls ... Read more

April 13, 2018April 13, 2018

NIH Agency Pioneers Collaborative Research into Rare Diseases

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A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. ... Read more

April 12, 2018April 12, 2018

Severe Asthma Patients with Bronchiectasis at Increased Risk of Hospitalization, Other Issues, Study Finds

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Patients with both severe asthma and bronchiectasis are at more risk of frequent hospitalization, gastroesophageal reflux disease, hypersensitivity to nonsteroidal anti-inflammatory drugs, and higher blood eosinophil counts than patients ... Read more

April 6, 2018April 6, 2018

European Regulators Agree to Review Aradigm’s Bronchiectasis Bacteria Therapy

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The European Medicines Agency has agreed to review Aradigm Corporation’s Linhaliq as a treatment for non-cystic fibrosis bronchiectasis patients with chronic Pseudomonas aeruginosa lung infections. If the agency recommends its ... Read more

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