Support and Resources
The resources below can help answer the questions that you and your loved ones 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.
The Voices of NTM Lung Disease
The Voices of NTM Lung Disease eMagazine provides helpful insights for all who come in contact with the condition. Stories and tips from patient, caregiver, physician, and advocacy groups round out a community of support.
Listen to NTM experts discuss NTM lung disease
Physicians in the field share their clinical experiences with NTM and what patients can expect from diagnosis to treatment.
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Communication
Education
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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2020 NTM TREATMENT GUIDELINES*
The NTM treatment guidelines were created by leading scientific communities to provide doctors with recommendations for the treatment of NTM lung disease. These guidelines are the globally recognized standard for the management of NTM lung disease.
Review the guidelines and speak to your doctor to find out if these guidelines could impact your treatment plan.
Learn more
*Guidelines developed by ATS/ERS/ESCMID/IDSA.
ATS=American Thoracic Society; ERS=European Respiratory Society; ESCMID=European Society of Clinical Microbiology and Infectious Diseases; IDSA=Infectious Diseases Society of America.
Tools and Guides
If you have not been diagnosed
If you think you may have NTM lung disease, it’s important to educate yourself and talk to your doctor about getting tested. 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.
If you HAVE NOT been diagnosed, click to download the tools below
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.
This resource is offered in a variety of languages:
Learn about why your symptoms may be more than just your previous lung condition with this downloadable brochure.
This resource is offered in a variety of languages:
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 and treatment options. 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.
If you HAVE been diagnosed, click to download the tools below
Download this discussion guide to help start a conversation about your NTM diagnosis and treatment options with your doctor.
Use this guide for a quick overview of the information, support, and resources available to you on your NTM journey.
This resource is offered in a variety of languages:
Use this resource as a guide to connect with people online or in the community who are also living with NTM and other lung conditions.
Connect With Others
Click to explore NTM communities for people with NTM lung disease.
Find a Specialist
If you think you have NTM lung disease, or if you've already been diagnosed, you may want to visit a clinical institution or visit a doctor in your area who specializes in lung disease.
NTM clinical institutions
Click to visit the clinical institutions listed below. Each specializes in respiratory diseases, including NTM.
EAST COAST
Jacksonville, FL
904-953-0853
University of North
Carolina at Chapel Hill >
Chapel Hill, NC
984-974-1000
National Institute of
Allergy and Infectious Diseases (NIAID) >
Bethesda, MD
866-284-4107
Washington, DC
202-444-8830
Philadelphia, PA
800-789-7366
Columbia University Medical Center >
New York, NY
877-426-5637
New York, NY
646-929-7800
Mount Sinai St Lukes and
Mount Sinai Roosevelt >
New York, NY
212-523-8672
Farmington, CT
844-388-2666
MIDWEST
Denver, CO
877-225-5654
Chicago, IL
773-702-1000
University of Texas
at Tyler >
Tyler, TX
903-531-8890
Rochester, MN
507-538-3270
WEST COAST
Oregon Health & Science University >
Portland, OR
503-494-1620
This list was adapted from BronchiectasisandNTMInitiative.org (accessed 10/26/2020).
Doctor finder
Click the links below to help you find a specialist.
Helpful Websites
The below organizations offer information and helpful resources on NTM and other lung conditions.
A non-profit organization that provides patient support, medical education, and research about NTM lung disease.
The American Thoracic Society Public Advisory Roundtable (ATS PAR) is a partnership with organizations representing people affected by respiratory diseases, sleep-related conditions, or related critical illnesses. ATS collaborates with them to advance shared educational, research, care, and advocacy goals.
The American Lung Association leads the fight for healthy lungs and is America’s trusted source for education, research, and support for lung health.
A non-profit organization that helps to improve the lives of people with COPD and NTM lung disease through research, education, and advocacy programs that will hopefully lead to a cure for this disease.
Learn more about your COPD with the COPD Learn More Breathe Better® program. This program helps raise awareness and understanding of COPD, and provides educational resources.
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.
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