Updates

June 1, 2020June 1, 2020
Most Bronchiectasis Patients in Europe Not Tested for NTM Infection as Recommended, Survey Suggests

Many bronchiectasis patients in Europe are not being tested for nontuberculous mycobacteria (NTM) infection before starting macrolide antibiotic treatment, as recommended by current guidelines, according ... Read more
May 28, 2020May 28, 2020
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays ... Read more
May 25, 2020May 25, 2020
Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 ... Read more
May 21, 2020May 21, 2020
Video Games Connect Chronically Ill Children Isolated at Home, Hospital

Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, ... Read more
May 20, 2020May 20, 2020
Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together ... 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

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

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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

HTLV-1 Infection Linked to Bronchiectasis in Indigenous Adults in Central Australia

Bronchiectasis Common in COPD Patients with Frequent Flares and Hospitalizations, Study Finds

Chronic Rhinosinusitis Prevalent in US Patients with Bronchiectasis, Study Reports

Bronchiectasis Patients in Korea Have Higher Mortality Risk Due to Lung Disease and Cancer, Analysis Reveals

Care of Children with Bronchiectasis Lags Those with Cystic Fibrosis, Australian Study Finds

Problems with Cilia in Patients Not Specific to Chronic Rhinosinusitis, Study Says

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

People With Blood Cancers More Prone to Develop Bronchiectasis, Study Finds

Aradigm Ends Effort to Win EU Approval for Linhaliq in Treating NCFBE Chronic Lung Infections

Parents of Children with Bronchiectasis Have More Anxiety, Depression, Study Reports

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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

Subscribe to our mailing list

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

HTLV-1 Infection Linked to Bronchiectasis in Indigenous Adults in Central Australia

Bronchiectasis Common in COPD Patients with Frequent Flares and Hospitalizations, Study Finds

Chronic Rhinosinusitis Prevalent in US Patients with Bronchiectasis, Study Reports

Bronchiectasis Patients in Korea Have Higher Mortality Risk Due to Lung Disease and Cancer, Analysis Reveals

Care of Children with Bronchiectasis Lags Those with Cystic Fibrosis, Australian Study Finds

Problems with Cilia in Patients Not Specific to Chronic Rhinosinusitis, Study Says

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

People With Blood Cancers More Prone to Develop Bronchiectasis, Study Finds

Aradigm Ends Effort to Win EU Approval for Linhaliq in Treating NCFBE Chronic Lung Infections

Parents of Children with Bronchiectasis Have More Anxiety, Depression, Study Reports

Pin It on Pinterest