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June 1, 2020June 1, 2020

Most Bronchiectasis Patients in Europe Not Tested for NTM Infection as Recommended, Survey Suggests

News

Many bronchiectasis patients in Europe are not being tested for nontuberculous mycobacteria (NTM) infection before starting macrolide antibiotic treatment, as recommended by current guidelines, according to a small survey of ... Read more

May 28, 2020May 28, 2020

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

News

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene ... Read more

May 25, 2020May 25, 2020

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

News, syndicated

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session ... Read more

May 21, 2020May 21, 2020

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

cystic fibrosis, News, syndicated

Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, and her perspective changed. Riva’s ... Read more

May 20, 2020May 20, 2020

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

News, syndicated

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. ... Read more

May 18, 2020May 18, 2020

Antibiotic Cayston Effective for Some Bronchiectasis Symptoms but Not All, Study Says

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Treatment with the inhaled antibiotic Cayston (aztreonam lysine) reduced cough and sputum production, but was not effective against breathlessness and wheezing in people with bronchiectasis, according to an analysis of two ... Read more

May 12, 2020May 12, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

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The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 11, 2020May 11, 2020

Savara to Advance Bronchiectasis Therapy Apulmiq After Deal With Grifols

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Savara Pharmaceuticals has acquired global rights to develop and commercialize Grifols‘ inhaled antibiotic formulation Apulmiq (ciprofloxacin) for the treatment for non-cystic fibrosis bronchiectasis (NCFB). The agreement comes a couple ... Read more

May 4, 2020May 4, 2020

Vitamin D Deficiency Linked to Poor Lung Function in Adults With Bronchiectasis

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Vitamin D deficiency is common in adults with bronchiectasis and may be linked to radiological findings indicative of poor lung function, a study reports. The study, “Vitamin D Deficiency ... Read more

April 28, 2020April 28, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

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