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BioNews, parent company of Bronchiectasis News Today, invites the members of our rare disease communities to join us in ...
01/24/2023

BioNews, parent company of Bronchiectasis News Today, invites the members of our rare disease communities to join us in recognizing Rare Disease Day in February by answering the question, “Why does rare disease awareness matter to you?” Email your 150-200-word response to [email protected] along with two high-quality pictures of yourself that capture your “why.” We encourage you to share your response on your personal social media accounts tagging BioNews and using the hashtag . Throughout February, your submission could be featured on our social media channels! More info: https://buff.ly/3GTFXxH

New Post: Can I Be a Morning Person with Endometriosis? https://buff.ly/363MN0g
10/25/2019

New Post: Can I Be a Morning Person with Endometriosis? https://buff.ly/363MN0g

Columnist Jessica Duffin has struggled for years with getting out of bed in the morning. Today, she is slowly training her body to adjust to her fatigue.

New Post: P. aeruginosa Adapt in Lungs to Make Mucus Harder to Clear, Study Finds https://buff.ly/2Gty7fQ
07/25/2019

New Post: P. aeruginosa Adapt in Lungs to Make Mucus Harder to Clear, Study Finds https://buff.ly/2Gty7fQ

A common source of lung infection, Pseudomonas aeruginosa can take on a mucoid state in the lungs to become stiffer and harder to clear, a study finds.

New Post: European Initiative Targets Diagnosis, Treatment of Rare Diseases https://buff.ly/2O1Wk3f
07/18/2019

New Post: European Initiative Targets Diagnosis, Treatment of Rare Diseases https://buff.ly/2O1Wk3f

Learn more about the EU's €101 million initiative to speed the diagnosis of rare diseases and accelerate development of therapies in 35 countries.

New Post: Life Quality in Bronchiectasis Patients Greatly Affected by Activity Levels, Mental Health and Inflammation, S...
07/18/2019

New Post: Life Quality in Bronchiectasis Patients Greatly Affected by Activity Levels, Mental Health and Inflammation, Study Says https://buff.ly/2LWzBmk

A life quality study found patients did poorly if their physical activity and leg strength was limited, and inflammation and anxiety or depression evident.

New Post: SmartVest Treatment Reduces Exacerbations, Antibiotic Use, and Stabilizes Lung Function, Study Shows https://b...
07/11/2019

New Post: SmartVest Treatment Reduces Exacerbations, Antibiotic Use, and Stabilizes Lung Function, Study Shows https://buff.ly/2NOZoPX

Treatment with SmartVest reduces exacerbations, hospitalizations, and antibiotic use in bronchiectasis, and stabilizes lung function, a study shows.

New Post: World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients https://buff.ly/2NvSLlu
07/04/2019

New Post: World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients https://buff.ly/2NvSLlu

Parent and rare disease activist Gordana Loleska got her native North Macedonia to issue the world's first Alport syndrome postage stamp.

New Post: Preclinical Data Supports Development of Inhaled Form of Murepavadin to Fight P. Aeruginosa Infections https:/...
06/27/2019

New Post: Preclinical Data Supports Development of Inhaled Form of Murepavadin to Fight P. Aeruginosa Infections https://buff.ly/31TkQGu

Preclinical data suggest that the experimental antibiotic murepavadin is both safe and effective at fighting restistant bacterial lung infections.

New Post: NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala https://buff.ly/2J8mQlF
06/26/2019

New Post: NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala https://buff.ly/2J8mQlF

Read about the individuals, nonprofit groups and pharmaceutical companies honored June 22 at NORD's Rare Impact Awards gala in Houston.

New Post: Eurordis Unveils Integrated-care Initiative for Rare Disease Patients https://buff.ly/2FowcbI
06/21/2019

New Post: Eurordis Unveils Integrated-care Initiative for Rare Disease Patients https://buff.ly/2FowcbI

Eurordis, Europe's allance for rare disease organizations, unveils an initiative aimed at achieving integrated care for patients and caregivers by 2030.

New Post: Bronchiectasis Patients Unlikely to Transmit Bacteria to Others Through Coughing, Study Suggests https://buff....
06/20/2019

New Post: Bronchiectasis Patients Unlikely to Transmit Bacteria to Others Through Coughing, Study Suggests https://buff.ly/2WTQqoT

Although bronchiectasis and COPD patients release bacteria during coughing, this process does not appear to spread infection to others, a study shows.

New Post: ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy https://buff.ly/2XVCRBI
06/17/2019

New Post: ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy https://buff.ly/2XVCRBI

Eurordis, the European alliance of rare disease organizations, uses a 10,000-member patient and caregiver database to conduct surveys on public policy.

New Post: Asthma a Common Cause, Risk Factor for Bronchiectasis in Finland, Registry Study Reveals https://buff.ly/2IJsN...
06/13/2019

New Post: Asthma a Common Cause, Risk Factor for Bronchiectasis in Finland, Registry Study Reveals https://buff.ly/2IJsN8v

Asthma is a common cause and complication of bronchiectasis, occurring in about one quarter of the patients who live in Helsinki, Finland, a study found.

New Post: NEATstik Shows Potential as Rapid Test for Chest Infection and Risk of Exacerbations in Bronchiectasis https:/...
06/06/2019

New Post: NEATstik Shows Potential as Rapid Test for Chest Infection and Risk of Exacerbations in Bronchiectasis https://buff.ly/2QPK2Zd

NEATstik showed potential as a quick method for detecting bronchiectasis severity, presence of airway infections, and risk of future disease exacerbations.

New Post: Antibiotics May Improve Quality of Life of Bronchiectasis Patients with High Bacterial Load, Study Suggests ht...
06/05/2019

New Post: Antibiotics May Improve Quality of Life of Bronchiectasis Patients with High Bacterial Load, Study Suggests https://buff.ly/2WgLlX7

Inhaled antibiotics may improve the quality of life of bronchiectasis patients, especially when they have a high bacterial load, a study suggests.

New Post: Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries https://buff.ly/2wmejWb
06/05/2019

New Post: Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries https://buff.ly/2wmejWb

Learn more about RaDaR, the new web-based platform by NCATS that helps patient advocacy groups with limited resources build their own disease registries.

New Post: Lung Bacteria Composition Remains Stable, May Correlate with Lung Function in nCFB, Study Says https://buff.ly...
06/04/2019

New Post: Lung Bacteria Composition Remains Stable, May Correlate with Lung Function in nCFB, Study Says https://buff.ly/2JyZiZT

The composition of bacteria living inside the lungs of people with non-cystic fibrosis bronchiectasis may correlate with lung function, a study says.

New Post: Treatment Algorithm Centered on Chest Physiotherapy May Minimize Lung Function Decline, Study Says https://buf...
05/17/2019

New Post: Treatment Algorithm Centered on Chest Physiotherapy May Minimize Lung Function Decline, Study Says https://buff.ly/2W1qNkL

Treatment using high-frequency chest wall oscillation (HFCWO) therapy may help minimize lung function decline in people with bronchiectasis, a study shows.

New Post: Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns https://buff.ly/2Hp732p
05/15/2019

New Post: Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns https://buff.ly/2Hp732p

The healthcare system fails millions of Americans due to the "invisible" cost of treating rare diseases, a National Institutes of Health official says.

New Post: N-acetylcysteine Potentially Beneficial for Bronchiectasis Patients, Trial Shows https://buff.ly/2PUp2jD
05/09/2019

New Post: N-acetylcysteine Potentially Beneficial for Bronchiectasis Patients, Trial Shows https://buff.ly/2PUp2jD

Mucus-dissolving and anti-inflammatory N-acetylcysteine reduces exacerbation and increases quality of life of patients with bronchiectasis, study shows.

New Post: Incidence of Non-CF Bronchiectasis is Rising in Germany, Study Reports https://buff.ly/2WkgMfh
05/02/2019

New Post: Incidence of Non-CF Bronchiectasis is Rising in Germany, Study Reports https://buff.ly/2WkgMfh

The incidence of non-cystic fibrosis bronchiectasis is increasing in Germany, so a better understanding of its economic burden is needed, a study suggests.

New Post: Nonprofit Group Works to Raise Rare Disease Awareness in India https://buff.ly/2GEIYUK
04/26/2019

New Post: Nonprofit Group Works to Raise Rare Disease Awareness in India https://buff.ly/2GEIYUK

The mission of the Organization for Rare Diseases India is to raise awareness in the rapidly growing country and connect patients with U.S. advocacy groups.

New Post: Bronchiectasis and COPD Patients in US Face High Financial Burden, Study Says https://buff.ly/2UTV70J
04/25/2019

New Post: Bronchiectasis and COPD Patients in US Face High Financial Burden, Study Says https://buff.ly/2UTV70J

U.S. patients with COPD and bronchiectasis face a high financial burden linked to healthcare costs and expenditures, a study reports.

New Post: Nucala Can Help Manage Symptoms of Severe Eosinophilic Asthma with Bronchiectasis, Pilot Study Shows https://b...
04/18/2019

New Post: Nucala Can Help Manage Symptoms of Severe Eosinophilic Asthma with Bronchiectasis, Pilot Study Shows https://buff.ly/2UrNc5Q

Italian researchers have shown that add-on treatment with Nucala can help control the symptoms of severe eosinophilic asthma with bronchiectasis.

New Post: Common Allergens Linked to Poorer Lung Function in Non-CF Bronchiectasis https://buff.ly/2KCGdHk
04/11/2019

New Post: Common Allergens Linked to Poorer Lung Function in Non-CF Bronchiectasis https://buff.ly/2KCGdHk

Read more about sensitization to airborne allergens among patients with non-CF bronchiectasis from the findings of a new international research study.

New Post: Vitamin D Deficiency Can Predict Severity of Bronchiectasis, Study Says https://buff.ly/2Id8rpt
04/04/2019

New Post: Vitamin D Deficiency Can Predict Severity of Bronchiectasis, Study Says https://buff.ly/2Id8rpt

Vitamin D deficiency may help predict the clinical and radiological severity of bronchiectasis, a study suggests.

New Post: More than Half of Bronchiectasis Patients Have Chronic Rhinosinusitis, Study Finds https://buff.ly/2V1sA5v
03/28/2019

New Post: More than Half of Bronchiectasis Patients Have Chronic Rhinosinusitis, Study Finds https://buff.ly/2V1sA5v

Chronic rhinosinusitis is prevalent among bronchiectasis patients, and is linked to greater disease severity, and poorer quality of life, a study finds.

New Post: Bronchiectasis Care is Expensive, But Hospitalizations Significantly Add to Cost, Study Shows https://buff.ly/...
03/21/2019

New Post: Bronchiectasis Care is Expensive, But Hospitalizations Significantly Add to Cost, Study Shows https://buff.ly/2HzxoMm

Hospitalization increases the high costs of bronchiectasis care and management, especially in patients who experience flare-ups, a review study shows.

New Post: Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn https://buff.ly/2TIALqD
03/15/2019

New Post: Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn https://buff.ly/2TIALqD

Learn more about why British patient advocacy organizations worry about the impact of Brexit on U.K. residents with rare diseases.

New Post: New Antibiotic Formulation Better at Controlling Infections in Bronchiectasis https://buff.ly/2FbMdSS
03/14/2019

New Post: New Antibiotic Formulation Better at Controlling Infections in Bronchiectasis https://buff.ly/2FbMdSS

Read about the advantages of a new formulation of antibiotics using nanoparticles, called nanoplex, as a delivery vehicle.

New Post: Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist https://buff.ly/2u1WXge
03/11/2019

New Post: Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist https://buff.ly/2u1WXge

Read about the difficult moral dilemmas that involve treating rare diseases, according to leading Jewish bioethicist Avraham Steinberg, MD.

New Post: Case Report Illustrates Risk of Bronchiectasis in People Not Vaccinated Against Measles https://buff.ly/2UoXJP...
03/07/2019

New Post: Case Report Illustrates Risk of Bronchiectasis in People Not Vaccinated Against Measles https://buff.ly/2UoXJPT

The case of a man who developed bronchiectasis after having measles as a child draws attention to disease risk due to fewer vaccinations, a study says.

New Post: NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research https://buff.ly/2IWgWr7
03/06/2019

New Post: NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research https://buff.ly/2IWgWr7

Read about Rare Disease Day 2019 at the National Institutes of Health, whose focus was on the 22 research networks investigating a range of rare diseases.

New Post: FDA Maintains Refusal of Aradigm’s Bronchiectasis Bacteria Therapy and Recommends Further Study https://buff.l...
02/28/2019

New Post: FDA Maintains Refusal of Aradigm’s Bronchiectasis Bacteria Therapy and Recommends Further Study https://buff.ly/2Xn7Er4

The U.S. FDA has stood by its initial refusal to approve Apulmiq for treating non-CF bronchiectasis associated with chronic P. aeruginosa lung infection.

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Comments

Is there many in this group?? I just learned I gave Bronchiectasis.... Was hoping to get into a group for support...
Thank you..