Blog

What Is the Bronchiectasis and NTM Care Center Network?

This blog post was authored by Lucinda Shore and reviewed by the Bronchiectasis and NTM Content Review and Evaluation Committee.As bronchiectasis and nontuberculous mycobacterial (NTM) lung disease become more common in the U.S., getting a quick, accurate diagnosis and expert care is very important. To help meet this need, the Bronchiectasis and NTM Association created the Bronchiectasis and NTM Care Center Network (CCN).The CCN connects people to medical centers throughout the U.S. that provide expert care and treatment, high-quality education, advice, and support for those living with bronchiectasis and NTM lung disease. The CCN gives sites one of two designations:Care Center: These centers offer a clinical research program, treat hundreds of people with bronchiectasis and NTM, and provide direct access to specialists (like dietitians or psychologists) for immediate care.Clinical Associate Center (CAC): CACs provide high-quality, expert care, but may see fewer people with both conditions, may be less involved in research, and may not have access to specialists within the center.

Press Release

Bronchiectasis and NTM Association announces Externally-Led Patient-Focused Drug Development meeting for non-cystic fibrosis bronchiectasis

The Bronchiectasis and NTM Association today announced plans for an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for non-cystic fibrosis bronchiectasis (NCFB). This meeting is modeled after the Food & Drug Administration’s (FDA) PFDD public meetings. Drug developers, FDA, and other stakeholders will be in attendance.NCFB is a chronic lung disease characterized by inflammation and chronic infection in which the airways become abnormally widened, thickened, and/or scarred. Once considered rare, NCFB is now recognized more widely as awareness, research, and advances in imaging have improved understanding of the disease. Although the first FDA-approved treatment for NCFB became available in 2025, significant challenges remain. Many people still face delays in diagnosis, limited access to specialized care, and difficulties managing the disease’s daily impact.The NCFB EL-PFDD meeting will:Enhance understanding of how living with NCFB impacts daily life experiences;Capture diverse perspectives of the NCFB community to help foster timely and effective therapy development; andInform regulatory decision-making with insights on current care and treatment benefit needs.

Discussion

Alpha 1 Antitrypsin Deficiency Month

KNOW YOUR LUNGS:  November is Alpha Awareness Month. Have you heard of Alpha-1 Antitrypsin Deficiency (Alpha-1)? Alpha-1 is an inherited genetic condition that can affect the lungs and liver. Many people have never heard of it, yet early diagnosis can make an important difference in the lives of those affected by this disorder.💙 Alpha-1 occurs when the body doesn’t produce enough of a protective protein called alpha-1 antitrypsin (AAT). This protein helps protect lung tissue from inflammation and damage. 🫁 How is it connected to bronchiectasis?Alpha-1 can contribute to lung damage.Some people with Alpha-1 develop bronchiectasis.Damaged airways can make it harder to clear mucus, increasing the risk of recurring respiratory infections.🔎 Common symptoms may include:•            Shortness of breath•            Chronic cough•            Excess mucus or sputum•            Recurrent respiratory infections•            Wheezing and fatigue🧬 Why does testing matter?  Alpha-1 can go undiagnosed for years because its symptoms often resemble asthma, COPD, or other respiratory conditions. Current guidelines recommend that people with COPD and unexplained bronchiectasis be evaluated for Alpha-1.💡 What can you do?✔️ Ask your pulmonologist whether Alpha-1 testing is appropriate.✔️ Know your family history.✔️ Avoid smoking and secondhand smoke.✔️ Stay current with recommended vaccinations.✔️ Work with your pulmonary team on an individualized airway-clearance plan.💙 AWARENESS MATTERS! Not every person with bronchiectasis has Alpha-1, and not everyone with Alpha-1 develops bronchiectasis. But understanding the connection may help identify an underlying cause and guide treatment.Alpha-1 Foundation – Contact Information  : Phone: 1-877-228-7321   Alternative phone: 305-567-9888 Website:  https://alpha1.org/alpha-1-awareness-month/Helpful Resources-the Foundation can help with:•            Patient education and educational materials.•            Alpha-1 testing information.•            Patient support groups.•            Finding physicians who specialize in Alpha-1.•            Research and clinical trial information.Have you or someone you know been tested for Alpha-1? Let’s start the conversation.