Updates

July 6, 2020July 6, 2020
Greater Difficulty in Breathing Linked to More Severe Bronchiectasis, Study Finds

Greater severity of dyspnea, or labored breathing, is associated with higher functional impairment in people with bronchiectasis, a study has found. Results also indicated ... Read more
June 26, 2020June 26, 2020
Flare Risk Drops if Brensocatib Clears Key Protein from NCFBE Patient Sputum, Trial Finds

Adults with non-cystic fibrosis bronchiectasis (NCFBE) who were given brensocatib in a Phase 2 trial were 72% less likely to be at risk of an exacerbation if neutrophil ... Read more
June 23, 2020June 23, 2020
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization ... Read more
June 22, 2020June 22, 2020
Progenitor Cell Transplant May Safely Stop Progression in Bronchiectasis

Transplanting progenitor cells to the lungs of bronchiectasis patients is safe and appears to stabilize disease, with no worsening in lung and physical function ... Read more
June 19, 2020June 19, 2020
Renovion Raises $8.1M to Advance ARINA-1 Nebulizer Therapy

Renovion has secured $8.1 million in funding for the clinical development of ARINA-1 (ascorbic acid), an experimental nebulizer therapy to clear mucus and reduce ... 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

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

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

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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

Air Pollution Raises Risk of Bronchiectasis-related Hospitalizations in Iran, Study Finds

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Mutations in Protein-Coding NEK10 Gene Can Compromise Mucus Clearance and Lead to Bronchiectasis, Study Finds

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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

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

Subscribe to our mailing list

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

Air Pollution Raises Risk of Bronchiectasis-related Hospitalizations in Iran, Study Finds

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

Mutations in Protein-Coding NEK10 Gene Can Compromise Mucus Clearance and Lead to Bronchiectasis, Study Finds

Pin It on Pinterest