Updates

July 11, 2019July 11, 2019
SmartVest Treatment Reduces Exacerbations, Antibiotic Use, and Stabilizes Lung Function, Study Shows

A treatment regimen that included high-frequency chest wall oscillation therapy with the SmartVest Airway Clearance System was found to reduce the number ... Read more
July 4, 2019July 4, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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 ... Read more
June 27, 2019June 27, 2019
Preclinical Data Supports Development of Inhaled Form of Murepavadin to Fight P. Aeruginosa Infections

A new experimental antibiotic named murepavadin is both safe and effective at fighting bacterial lung infections caused by Pseudomonas aeruginosa when given via inhalation, ... Read more
June 26, 2019June 25, 2019
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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 ... Read more
June 21, 2019June 21, 2019
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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 ... Read more

News

Bronchiectasis Patients Unlikely to Transmit Bacteria to Others Through Coughing, Study Suggests
June 20, 2019June 20, 2019
Although patients with bronchiectasis and chronic obstructive pulmonary disease (COPD) release bacteria when they ...
News

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 17, 2019June 17, 2019
People with rare diseases know that the right government policies can make a big ...
News

Asthma a Common Cause, Risk Factor for Bronchiectasis in Finland, Registry Study Reveals
June 13, 2019June 13, 2019
Asthma is a common cause and complication of bronchiectasis, triggering the disease in about ...
News

NEATstik Shows Potential as Rapid Test for Chest Infection and Risk of Exacerbations in Bronchiectasis
June 6, 2019June 6, 2019
NEATstik, a test developed by ProAxsis, shows potential as a quick tool for assessing bronchiectasis ...
News

Antibiotics May Improve Quality of Life of Bronchiectasis Patients with High Bacterial Load, Study Suggests
May 31, 2019May 31, 2019
Inhaled antibiotics appear to improve the quality of life of bronchiectasis patients, especially when ...
News

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 27, 2019May 27, 2019
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims ...

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Lung Bacteria Composition Tends to Remains Stable, May Correlate with Lung Function in nCFB, Study Says
May 23, 2019May 23, 2019
The composition of bacteria living inside the lungs of people with non-cystic fibrosis bronchiectasis ...
Treatment Algorithm Centered on Chest Physiotherapy May Minimize Lung Function Decline, Study Says
May 17, 2019May 17, 2019
A treatment algorithm centered on the use of high-frequency chest wall oscillation (HFCWO) therapy ...
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 15, 2019May 15, 2019
N-acetylcysteine Potentially Beneficial for Bronchiectasis Patients, Trial Shows
May 9, 2019May 9, 2019
Incidence of Non-CF Bronchiectasis is Rising in Germany, Study Reports
May 2, 2019May 2, 2019
Bronchiectasis and COPD Patients in US Face High Financial Burden, Study Says
April 25, 2019

Nonprofit Group Works to Raise Rare Disease Awareness in India
April 25, 2019April 25, 2019
With an estimated 1.37 billion inhabitants, India will likely surpass China in five years ...
Nucala Can Help Manage Symptoms of Severe Eosinophilic Asthma with Bronchiectasis, Pilot Study Shows
April 18, 2019April 18, 2019
Common Allergens Linked to Poorer Lung Function in Non-CF Bronchiectasis
April 11, 2019April 11, 2019
Vitamin D Deficiency Can Predict Severity of Bronchiectasis, Study Says
April 4, 2019April 4, 2019

More than Half of Bronchiectasis Patients Have Chronic Rhinosinusitis, Study Finds
March 28, 2019March 28, 2019
Up to 62 percent of adults with bronchiectasis also have chronic rhinosinusitis (CRS), which ...
Bronchiectasis Care is Expensive, But Hospitalizations Significantly Add to Cost, Study Shows
March 21, 2019March 21, 2019
Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 15, 2019March 15, 2019

News

New Antibiotic Formulation Better at Controlling Infections in Bronchiectasis
March 14, 2019March 14, 2019
Inhaled antibiotics have been proposed as efficient treatments to reduce bacterial infections in bronchiectasis ...
News

Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 11, 2019March 11, 2019
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ...
News

Case Report Illustrates Risk of Bronchiectasis in People Not Vaccinated Against Measles
March 7, 2019March 7, 2019
The case of a man whose measles infection as a child was linked to ...
News

NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 6, 2019March 6, 2019
Rare diseases affect about 30 million Americans — roughly the same number as those ...
News

FDA Maintains Refusal of Aradigm’s Bronchiectasis Bacteria Therapy and Recommends Further Study
February 28, 2019February 28, 2019
The U.S. Food and Drug Administration (FDA) has stood by its initial refusal to approve ...
News

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 25, 2019February 25, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...
News

Lower Oxygen Levels During Exercise Is a Risk Factor for Osteoporosis in Non-CF Bronchiectasis, Study Reports
February 21, 2019February 21, 2019
Decreased blood oxygen levels during the six-minute walk test (6MWT) is a risk factor ...
News

Vienna to Host RARE2019 Meeting on Rare Diseases
February 20, 2019February 20, 2019
About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city ...
News

Glittre Test Can Help Evaluate Functional Capacity and Activities of Daily Living in Bronchiectasis Patients
February 14, 2019February 14, 2019
The Glittre activities of daily living (ADL) test can help evaluate functional capacity and daily ...
News

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 11, 2019February 11, 2019
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities ...
News

Pulmonary Rehabilitation Program May Improve Physical Activity Levels in Adults with Bronchiectasis
February 7, 2019February 7, 2019
A home-based pulmonary rehabilitation program helped to improve the physical activity and overall clinical status ...
News

Traction Bronchiectasis Is a Potential Indicator of Poor Prognosis in Acute Eosinophilic Pneumonia, Study Finds
January 31, 2019January 31, 2019
A retrospective study of acute eosinophilic pneumonia (AEP) patients found that traction bronchiectasis (TBE) ...
News

Independent Review Supports Aqulmiq in Delaying Flares in NCFBE, Report Says
January 24, 2019January 24, 2019
Treatment with Apulmiq (ciprofloxacin) can delay the first acute respiratory episode in non-cystic fibrosis ...
News

Rare Tracheal Infection with Achromobacter in Bronchiectasis Patient Reported in Case Study
January 17, 2019January 17, 2019
A rare infection of the trachea with the bacteria Achromobacter xylosoxidans deteriorated the respiratory function ...
News

Statins, Mucolytics May Lower Risk of Exacerbations, Death Among BCO Patients, Study Finds
January 10, 2019January 10, 2019
Statins and mucolytics may lower the risk of acute exacerbations and death among patients ...

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