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July 11, 2019July 11, 2019

SmartVest Treatment Reduces Exacerbations, Antibiotic Use, and Stabilizes Lung Function, Study Shows

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A treatment regimen that included high-frequency chest wall oscillation therapy with the SmartVest Airway Clearance System was found to reduce the number of exacerbations requiring hospitalization, lower antibiotic use, ... Read more

July 4, 2019July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

June 27, 2019June 27, 2019

Preclinical Data Supports Development of Inhaled Form of Murepavadin to Fight P. Aeruginosa Infections

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A new experimental antibiotic named murepavadin is both safe and effective at fighting bacterial lung infections caused by Pseudomonas aeruginosa when given via inhalation, a study in mice shows. ... Read more

June 26, 2019June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 21, 2019June 21, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

June 20, 2019June 20, 2019

Bronchiectasis Patients Unlikely to Transmit Bacteria to Others Through Coughing, Study Suggests

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Although patients with bronchiectasis and chronic obstructive pulmonary disease (COPD) release bacteria when they cough, this process does not appear to contribute to the spread of infection to the ... Read more

June 17, 2019June 17, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 13, 2019June 13, 2019

Asthma a Common Cause, Risk Factor for Bronchiectasis in Finland, Registry Study Reveals

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Asthma is a common cause and complication of bronchiectasis, triggering the disease in about one quarter of patients who live in Helsinki, Finland’s capital, a registry-based study found. Patients ... Read more

June 6, 2019June 6, 2019

NEATstik Shows Potential as Rapid Test for Chest Infection and Risk of Exacerbations in Bronchiectasis

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NEATstik, a test developed by ProAxsis, shows potential as a quick tool for assessing bronchiectasis severity, the presence of airway infections, and the risk of future disease exacerbations, early data ... Read more

May 31, 2019May 31, 2019

Antibiotics May Improve Quality of Life of Bronchiectasis Patients with High Bacterial Load, Study Suggests

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Inhaled antibiotics appear to improve the quality of life of bronchiectasis patients, especially when they have a high bacterial load, a study suggests. This means that bacterial load may ... Read more

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