Updates

February 23, 2021February 23, 2021
Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on ... Read more
February 22, 2021February 22, 2021
Bronchiectasis Can Increase Number of Asthma Attacks, Analysis Finds

More than 30% of people with asthma have bronchiectasis, which can worsen airway obstruction and increase ... Read more
February 19, 2021February 19, 2021
Bronchiectasis May Increase Risk for Severe COVID-19 Disease

Bronchiectasis might be more frequent in people with severe COVID-19 disease, increasing by over threefold the ... Read more
February 18, 2021February 18, 2021
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according ... Read more
February 15, 2021February 15, 2021
Tobramycin, Inhaled Antibiotic, Eases Symptoms, Study in Off-label Use Finds

Off-label use of the inhaled antibiotic tobramycin lowered sputum production, and eased shortness of breath, and ... Read more

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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. ... Read more

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Bronchiectasis Can Increase Number of Asthma Attacks, Analysis Finds

Bronchiectasis May Increase Risk for Severe COVID-19 Disease

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Tobramycin, Inhaled Antibiotic, Eases Symptoms, Study in Off-label Use Finds

Electromed Resumes Study of SmartVest

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Chronic Fungi Infection Tied to Poor Outcomes in NTM Lung Disease

CT Scores for Bronchiectasis, Nodules Predict NTM Recurrence

Treatment With Ciprofloxacin Antibiotics Found to Reduce Exacerbations

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

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Spanish Registry Seen to Capture Disease Scope, May Guide Research

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Increased Risk of Bronchiectasis Linked to Newly Found STAT1 Mutation

Some Respiratory Symptoms Should Spark Suspicion of Bronchiectasis in Children

NORD’s Caregiver Respite Program Continues Through Pandemic

Art Contest Salutes Creativity of Rare Disease Communities

Chronic Fungal Infection May Be Common in Non-CF Bronchiectasis

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

Measuring Procalcitonin in Sputum May Help Manage Flare-ups

RHB-204, Oral Treatment for MAC Lung Infections, Put on FDA Fast Track

Corticosteroid Use Higher in Children With Bronchiectasis Who Have Asthma

Hypertonic Saline May Boost Benefits of Airway Clearance Techniques in Children

Endothelial Progenitor Cells (EPCs) Linked to Disease Severity in Study

Young Bronchiectasis Patients Less Prepared to Shift to Adult Healthcare, NZ Study Finds

Savara Discontinues Apulmiq Program for NCFB Amid Cost-cutting Measures

Study Recommends Longer Rest Interval Between 6-min Walk Tests for Non-CF Bronchiectasis Patients

Phase 3 ASPEN Trial Testing Brensocatib Now Recruiting; First Patient Dosed

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

RedHill Launches Trial to Test RHB-204 for Bronchiectasis Plus MAC Lung Infections

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

EMA Grants PRIME Status to Brensocatib for Treating Non-CF Bronchiectasis

Bronchiectasis Worsens Lung Function, Quality of Life in Severe Asthma, Study Finds

Being Underweight Linked to Poorer Lung Function in Bronchiectasis Patients in US Study

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

South Korean Tuberculosis Control Program May Have Contributed to Lower Bronchiectasis Rates

Arikayce Approved in Europe for MAC Lung Infections in Non-CF Adults

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner