Updates

September 5, 2019September 5, 2019
Long-term Macrolide Treatment Linked to Significant Reduction in Bronchiectasis Exacerbations, Study Shows

Long-term treatment with macrolides — a class of antibiotics — is associated with a significant reduction in the frequency of exacerbations in ... Read more
September 2, 2019August 30, 2019
‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. ... Read more
August 29, 2019August 29, 2019
New Distribution Partnerships for SmartVest System Announced

Electromed has entered into new agreements with two home medical equipment distributors to enhance the distribution of and facilitate access to its SmartVest Airway ... Read more
August 28, 2019August 28, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially ... Read more
August 22, 2019August 22, 2019
High Incidence of Bronchiectasis Among Children with Severe Asthma, UK Study Found

A high incidence of bronchiectasis was found among children with severe asthma in a study conducted in the U.K. The study also revealed that ... Read more

News

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...
News

More Studies Needed on Antibiotic Use in Children With Bronchiectasis, Review Finds
August 15, 2019
A lack of data on the use of different antibiotics to treat and/or prevent ...
News

Frequent Disease Exacerbations Linked to Worse Quality of Life for Australian Bronchiectasis Patients, Study Shows
August 8, 2019August 8, 2019
People with bronchiectasis who experience frequent exacerbations — three or more in the previous ...
News

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 2, 2019August 2, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
News

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, ...
News

Bronchiectasis Patients Have Worse Quality of Life if Disease is COPD-related and More Severe, Study Says
August 1, 2019August 1, 2019
The quality of life of patients with bronchiectasis is heavily affected by the root ...

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P. aeruginosa Adapt in Lungs to Make Mucus Harder to Clear, Study Finds
July 25, 2019July 25, 2019
Pseudomonas aeruginosa, the most common bacterial infection found in bronchiectasis patients, can adapt in ...
European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 18, 2019July 18, 2019
A new international consortium based in Paris, and funded largely by the 28-member European ...
Life Quality in Bronchiectasis Patients Greatly Affected by Activity Levels, Mental Health and Inflammation, Study Says
July 18, 2019July 18, 2019
SmartVest Treatment Reduces Exacerbations, Antibiotic Use, and Stabilizes Lung Function, Study Shows
July 11, 2019July 11, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 4, 2019July 4, 2019
Preclinical Data Supports Development of Inhaled Form of Murepavadin to Fight P. Aeruginosa Infections
June 27, 2019June 27, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
June 21, 2019June 21, 2019
Bronchiectasis Patients Unlikely to Transmit Bacteria to Others Through Coughing, Study Suggests
June 20, 2019June 20, 2019
‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 17, 2019June 17, 2019

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 ...
NEATstik Shows Potential as Rapid Test for Chest Infection and Risk of Exacerbations in Bronchiectasis
June 6, 2019June 6, 2019
Antibiotics May Improve Quality of Life of Bronchiectasis Patients with High Bacterial Load, Study Suggests
May 31, 2019May 31, 2019

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 ...
News

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 ...
News

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 ...
News

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 15, 2019May 15, 2019
With 250 rare diseases newly identified every year, scientists can barely keep up — ...
News

N-acetylcysteine Potentially Beneficial for Bronchiectasis Patients, Trial Shows
May 9, 2019May 9, 2019
Treatment with N-acetylcysteine, a mucus-dissolving and anti-inflammatory agent, reduces the frequency of acute worsening ...
News

Incidence of Non-CF Bronchiectasis is Rising in Germany, Study Reports
May 2, 2019May 2, 2019
The incidence of non-cystic fibrosis bronchiectasis is rising in Germany, which necessitates a better ...
News

Bronchiectasis and COPD Patients in US Face High Financial Burden, Study Says
April 25, 2019
The financial burden associated with healthcare costs is relatively high for U.S. patients with ...
News

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 ...
News

Nucala Can Help Manage Symptoms of Severe Eosinophilic Asthma with Bronchiectasis, Pilot Study Shows
April 18, 2019April 18, 2019
Nucala (mepolizumab) can help manage the respiratory symptoms of patients with severe uncontrolled asthma and ...
News

Common Allergens Linked to Poorer Lung Function in Non-CF Bronchiectasis
April 11, 2019April 11, 2019
Patients with non-cystic fibrosis bronchiectasis across the world have high rates of sensitization to airborne ...
News

Vitamin D Deficiency Can Predict Severity of Bronchiectasis, Study Says
April 4, 2019April 4, 2019
The majority of patients with bronchiectasis are deficient in vitamin D, a feature that was found ...
News

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 ...
News

Bronchiectasis Care is Expensive, But Hospitalizations Significantly Add to Cost, Study Shows
March 21, 2019March 21, 2019
Hospitalization markedly increases the costs of bronchiectasis care and management, especially in patients who ...
News

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 15, 2019March 15, 2019
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ...
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 ...

April 10, 2017

What a Doctor Wants People to Know About Chronic Illnesses

Social Clips

Having a chronic illness presents many challenges for patients, not only in terms of managing the symptoms they suffer but also having to deal with people’s preconceived ideas about invisible illnesses. MORE: What to expect when living with ... Read more

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