Support and Resources

The resources below can help answer the questions you may have, whether it’s finding more information about nontuberculous mycobacterial (NTM) lung disease or looking for ways to talk to other people with NTM lung disease. You can also join AboutNTM Support to help you stay up to date and give you additional support.

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Education

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Support

Whether you are newly diagnosed or recently diagnosed, it’s important to have up-to-date information about NTM lung disease. Sign up today to receive helpful information, support, and resources, including an NTM informational fact sheet, health and wellness guide, and more.

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Tools and Guides

If you have not been diagnosed

If you think you may have NTM lung disease, it’s important to educate yourself. The resources below can provide useful information to answer your questions about what NTM lung disease is, who is at risk, and what to expect if you’re diagnosed.

Remember to talk to your doctor or a specialist about your current lung conditions and symptoms, and ask if getting tested for NTM lung disease may be right for you.

CLICK TO DOWNLOAD the tools below

Doctor Discussion Guide

Download this discussion guide to record the symptoms you’ve been experiencing, your history of lung conditions, medical history, and a list of the questions you have. Then, bring the discussion guide with you to your next appointment to help you start a conversation about NTM lung disease with your doctor.

“Insight”: A Patient’s Perspective

Read this pamphlet from NTM Info & Research (NTMir) for a broad overview about NTM lung disease, including what is NTM, who is at risk, and how it is diagnosed.

“Could it be NTM?” Brochure

Learn about why your symptoms may be more than just your previous lung condition with this downloadable brochure.

If you have been diagnosed

If you’ve been diagnosed with NTM lung disease, you may have questions about how you got NTM and what happens next, including what to expect from living with NTM lung disease. Use the resources below to help you learn more about NTM.

To help you prepare for your next conversation with your doctor about NTM lung disease, use this Doctor Discussion Guide. Starting the dialogue isn’t always easy, but this way you know exactly what you want to talk about, and your doctor can have the information he or she needs from you.

CLICK TO DOWNLOAD the tools below

Doctor Discussion Guide

Download this discussion guide to help start a conversation about your NTM diagnosis and treatment options with your doctor.

“Living with NTM lung disease” Brochure

Use this guide for a quick overview of the information, support, and resources available to you on your NTM journey.

“Insight”: A Patient’s Perspective

Read this pamphlet from NTM Info & Research (NTMir) for a broad overview of NTM lung disease, including the common symptoms of NTM, how to manage living with NTM, and how to reduce your exposure in the future.

Watch Real NTM Stories

You are not alone. People with NTM lung disease have shared their stories in hopes of spreading more awareness of this disease. Below are a few videos of real people and their stories of how NTM lung disease changed their lives.

Donna’s Story
Donna’s journey

Hear Donna’s journey

Donna was a devoted churchgoer and attentive teacher. But a cough and shortness of breath made it difficult for her to go out and enjoy the things she loved. Soon, that little cough turned into something much more drastic—coughing up blood. After a misdiagnosis, hospitalizations, and a lot of fear, learn how Donna found out what was wrong.

Jim's Story
Jim's diagnosis

Watch Jim’s road to diagnosis

Jim was living happily, doing all the things he loved. But a sudden cough and crippling exhaustion prevented him from enjoying retirement. When his cough worsened without reason, a trip to the hospital suddenly turned his world upside down. Watch what happened to Jim and how he finally got the answers he needed.

Betsy’s Story
Video: Betsy's Story

Listen to Betsy’s story

Mother. Wife. Employee. Betsy lived a normal life until an unknown illness disrupted it. Her life became consumed with doctor’s appointments, tests, medications, and coughing—all without an answer. See how difficult it was for Betsy to finally get to an NTM lung disease diagnosis.

NTM and Other Lung 
Conditions Information

The below organizations offer information and helpful resources on NTM and other lung conditions.

NTM clinical institutions

Click to visit the clinical institutions listed below. Each specializes in respiratory diseases, including NTM.

EAST COAST

University of Miami >

Miami, FL
305-243-6387

Mayo Clinic >

Jacksonville, FL
904-953-0853

Georgetown University >

Washington, DC
202-444-8830

University of 
Pennsylvania >

Philadelphia, PA
800-789-7366

Columbia University >

New York, NY
877-426-5637

New York University >

New York, NY
646-929-7845

University of 
Connecticut >

Farmington, CT
844-388-2666

MIDWEST

National Jewish Health >

Denver, CO
877-225-5654

Mayo Clinic >

Rochester, MN
507-538-3270

WEST COAST

This list was adapted from BronchiectasisandNTMInitiative.org (accessed 4/9/2018).

Rare disease information

The National Organization for Rare Disorders (NORD) provides a unified voice for those affected by rare diseases. NORD has a long history of providing services, financial aid, and running programs to support every member of the rare disease community, patients, caretakers, and families.

Find a Specialist

If you think you could have NTM lung disease, or if you’ve already been diagnosed, you may wish to see a doctor in your area who specializes in lung disease. Click the links below to help you find a specialist who can help.

Interested in receiving helpful resources, support, and information about NTM lung disease?