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Oct. 28, 2015

TOPIC: Medical

NORD Publishes Guide to Promote Physician Awareness of Rare Lung Disorder

Posted by Jennifer Huron
NORD Physician Guides

NORD Publishes Free Online Guides to Encourage Diagnosis and Treatment for Patients

The National Organization for Rare Disorders (NORD) has published a Physician Guide to Nontuberculous Mycobacterial Lung Disease to promote awareness of this rare disorder among physicians and other medical professionals.

The guide is free and available to all at www.NORDPhysicianGuides.org, a website hosted by NORD. The guide can also be accessed from NORD’s primary website at www.rarediseases.org.

“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.”

The new Physician Guide was written by Leah Lande, M.D., 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.

Nontuberculous mycobacteria (NTM) are naturally occurring organisms found in water and soil that, when inhaled, may cause lung infection in some susceptible individuals. More than 140 species of these mycobacteria have been identified to date.

In most cases, these organisms do not cause infection. However, in some individuals, for reasons that are not fully understood, exposure to NTM in the environment can lead to infection that, in severe cases, may result in chronic lung disease requiring ongoing treatment.

NORD is publishing this guide in partnership with its member organization, NTM Info & Research Inc., which provides support and information to patients and families affected by NTM lung disease. The NTM Info & Research website is at http://www.ntminfo.org/.

As the primary nonprofit organization representing Americans with rare diseases, NORD established its NORD Physician Guides as part of a broader strategic initiative to promote earlier diagnosis and state-of-the-art care for people with rare diseases. Each online guide is written by a medical professional with expertise on the topic. The guides cover signs & symptoms, diagnosis, treatment, investigational therapies, and other related topics.

Other recent guides in the series include The Physician Guide to Lipoprotein Lipase Deficiency, The Physician Guide to Homozygous Familial Hypercholesterolemia and The Physician Guide to Infantile Spasms.

The NTM guide was made possible by an educational grant from Insmed Inc. NORD and the author are solely responsible for the content.

2 Responses to “NORD Publishes Guide to Promote Physician Awareness of Rare Lung Disorder”

  1. Peg Nadel says:

    Thank God for you all and hopefully, aid in finding cures (I use the word advisedly) for this persistent disease.

  2. Judy Davenport says:

    I have NTM and have been in Insmeds Drug Study for 8 months. I am interested in helping others in my area of Western Ky. who have NTM. I would be willing to help start a support group for Ky, Tn., Illinois, Mo. I live no more than 20 miles from each state. I am improving every day with my current drug regimine and would not be alive if it weren’t for Insmed. Judy Davenport 270-559-9739

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