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June 21, 2018June 21, 2018

Life Quality Questionnaires Given Bronchiectasis Patients Miss the Mark, Study Finds

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Bronchiectasis has a “highly personal” impact on patients’ quality of life, a U.K study reports, but a number of factors are of particular impact, including an ability to control symptoms and ... Read more

June 14, 2018June 14, 2018

Impaired Bacterial Death by Neutrophils May Explain Chronic Bronchiectasis Infections, Study Suggests

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Impaired antibacterial activity of neutrophils in bronchiectasis patients may be why they are so susceptible to chronic lung infections, according to researchers from the U.K. Their study, “Blood Neutrophils are ... Read more

June 7, 2018June 7, 2018

Lung Transplant Can Benefit Patients with Severe Bronchiectasis, Study Finds

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A lung transplant can benefit patients with non-cystic fibrosis bronchiectasis at advanced stages, and should be considered by physicians as a therapeutic option, a study found. Findings show that lung transplantation ... Read more

June 4, 2018June 4, 2018

US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases

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As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn of Indianapolis tried twice to embrace him. The third time, ... Read more

May 31, 2018May 31, 2018

Bronchiectasis in COPD Patients Carries Higher Risk of Acute Flares and Other Respiratory Problems, Study Shows

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Bronchiectasis in chronic obstructive pulmonary disease (COPD) patients is associated with a notably higher risk of acute respiratory flares and other serious problems, a Taiwan study shows, and its researchers emphasized that ... Read more

May 29, 2018May 29, 2018

#ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges

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Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a rather nebulous term that means different things to different people. ... Read more

May 24, 2018May 24, 2018

Severity of Bronchiectasis Linked to ‘Air Trapping’ in COPD Patient Lungs in Study

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A poor ability to effectively expel air from the lungs — known as “air trapping” — may be a predictor of bronchiectasis severity in people with moderate-to-severe chronic obstructive pulmonary disease (COPD), a study ... Read more

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. The ... 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 Vienna ... 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, “Incidence ... Read more