Updates

August 3, 2020August 3, 2020
Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

To raise awareness of the rare disease communities and celebrate the creativity of its members, the EveryLife Foundation for Rare Diseases is seeking submissions ... Read more
July 24, 2020July 24, 2020
Inhaled Antibiotics Lower Flare Risk in Non-CF Bronchiectasis, But Have Limits

Inhaled antibiotics can effectively kill bacteria and lessen exacerbations in people with stable non-cystic fibrosis bronchiectasis (NCFB), but they do not improve lung function ... Read more
July 20, 2020July 20, 2020
Low Bacterial Diversity in Lungs Tied to Damaging Enzyme in Bronchiectasis

A low diversity of bacterial species in the lungs of adults with bronchiectasis is linked with higher levels of an enzyme called active neutrophil ... Read more
July 17, 2020July 17, 2020
Smoking, Respiratory Issues, Older Age Raise Hospital Costs, Chinese Study Finds

Older age, smoking, and having other respiratory symptoms and conditions increase the hospitalization costs of people with bronchiectasis, a large Chinese study says. The ... Read more
July 13, 2020July 13, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... 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. MORE: What to expect when living with bronchiectasis. Dr. ... Read more

Updates

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

Inhaled Antibiotics Lower Flare Risk in Non-CF Bronchiectasis, But Have Limits

Low Bacterial Diversity in Lungs Tied to Damaging Enzyme in Bronchiectasis

Smoking, Respiratory Issues, Older Age Raise Hospital Costs, Chinese Study Finds

Causes, Symptoms of Non-CF Bronchiectasis Have Changed in Children, Study Suggests

Greater Difficulty in Breathing Linked to More Severe Bronchiectasis, Study Finds

Flare Risk Drops if Brensocatib Clears Key Protein from NCFBE Patient Sputum, Trial Finds

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Progenitor Cell Transplant May Safely Stop Progression in Bronchiectasis

Renovion Raises $8.1M to Advance ARINA-1 Nebulizer Therapy

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Brensocatib Named FDA Breakthrough Therapy for Non-CF Bronchiectasis

Asthma-associated Bronchiectasis Becoming More Frequent in Spain, Study Finds

Coalition Will Address Racial Disparities in Rare Disease Communities

Cardiovascular Disease Raises Risk of Bronchiectasis Exacerbations, Study Reports

UK Survey: Reduced Pollution Due to COVID-19 Benefits People with Lung Conditions

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

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

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

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

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

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

Savara to Advance Bronchiectasis Therapy Apulmiq After Deal With Grifols

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

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

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

Brensocatib, Potential Bronchiectasis Therapy, to Enter COVID-19 Trial

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

NTMir Opens Website to Educate Patients About Bronchiectasis, NTM

Bronchiectasis in HIV Patients Can Be Misdiagnosed, Poorly Treated

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Bubble-PEP Effective at Clearing Airways in Bronchiectasis, Study Reports

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Mobile App for SmartVest System Available for Patients’ Use

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Molgradex Stops Bacteria in Bronchiectasis Patients with Lung Infections, Trial Shows

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

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Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

Inhaled Antibiotics Lower Flare Risk in Non-CF Bronchiectasis, But Have Limits

Low Bacterial Diversity in Lungs Tied to Damaging Enzyme in Bronchiectasis

Smoking, Respiratory Issues, Older Age Raise Hospital Costs, Chinese Study Finds

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Causes, Symptoms of Non-CF Bronchiectasis Have Changed in Children, Study Suggests

Greater Difficulty in Breathing Linked to More Severe Bronchiectasis, Study Finds

Flare Risk Drops if Brensocatib Clears Key Protein from NCFBE Patient Sputum, Trial Finds

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Progenitor Cell Transplant May Safely Stop Progression in Bronchiectasis

Renovion Raises $8.1M to Advance ARINA-1 Nebulizer Therapy

Subscribe to our mailing list

Brensocatib Named FDA Breakthrough Therapy for Non-CF Bronchiectasis

Asthma-associated Bronchiectasis Becoming More Frequent in Spain, Study Finds

Coalition Will Address Racial Disparities in Rare Disease Communities

Cardiovascular Disease Raises Risk of Bronchiectasis Exacerbations, Study Reports

UK Survey: Reduced Pollution Due to COVID-19 Benefits People with Lung Conditions

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

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

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

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

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

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

Savara to Advance Bronchiectasis Therapy Apulmiq After Deal With Grifols

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

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

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

Brensocatib, Potential Bronchiectasis Therapy, to Enter COVID-19 Trial

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

NTMir Opens Website to Educate Patients About Bronchiectasis, NTM

Bronchiectasis in HIV Patients Can Be Misdiagnosed, Poorly Treated

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Bubble-PEP Effective at Clearing Airways in Bronchiectasis, Study Reports

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

Mobile App for SmartVest System Available for Patients’ Use

Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Molgradex Stops Bacteria in Bronchiectasis Patients with Lung Infections, Trial Shows

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds

Pin It on Pinterest