NORD Published Guide for Physician Awareness of Rare Lung Disease

Rebekah Harrison

A Physician Guide to Nontuberculous Mycobacterial Lung Disease has been published by the National Organization of Rare Disorders (NORD) to promote awareness and proper management of this rare lung disorder among physicians and other medical professionals.
The guide is free and available at and includes information about symptoms, diagnoses and treatment.
The guide was written by Leah Lande, MD, of the Division of Pulmonary and Critical Care Medicine, Lankenau Medical Center. Dr Lande is also a member of the faculty of Jefferson University Medical College.
The new guide joins many other NORD publications such as those for for Gaucher disease, hereditary angioedema, homozygous familial hypercholesterolemia, as well as many rare diseases.
"We are pleased to announce this newest addition to our Physician Guide series," said NORD President and CEO Peter L. Saltonstall. "This series is part of NORD's outreach to medical professionals to reduce the time to diagnosis and promote optimal treatment for patients with rare diseases."

What is Nontuberculous Mycobacterial (NTM) Lung Disease?

NTM are mycobacterial species that are present in the environment that can  cause chronic lung infections. More than 140 species of these mycobacteria have been identified to date. Symptoms include cough, fatigue, respiratory infections, dyspnea, hemoptysis and fever. Treatment includes antimicrobial regimens.
“There are certain people who are more susceptible including people with chronic lung disease such as cystic fibrosis or bronchiectasis or COPD,” said Dr Lande in an interview with The Balancing Act. “But then there’s a group of people who don’t have any underlying disease at all and actually are previously quite healthy that can get this infection, more commonly women, and these people tend to share certain characteristics.”
Treatment of NTM lung disease is challenging. Often, a combination of antibiotic drugs is the mainstay of therapy but these drugs are often poorly tolerated, have a high cost, and require lengthy treatments. There are currently no specific orphan drugs approved for NTM lung disease but Insmed is conducting a randomized, phase 3, open-label study to evaluate the effectiveness of liposomal Amikacin for inhalation when added to multi-drug regimen in individuals with NTM lung infection caused by mycobacterium avium complex.


National Organization for Rare Disorders (NORD) Publishes Guide to Promote Physician Awareness of Rare Lung Disorder [new release]. Danbury, CT; National Organization for Rare Disorders: October 28, 2015. 
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