Rare Lung Disease II

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Rare Lung Disease II

Rare Lung Disease Week II

Welcome Message

Welcome to “Lung Disease Week at the ATS” that is sponsored with our partner organizations that participate in the Public Advisory Roundtable (PAR). Many of us at the ATS thrive in the interaction with disease specific not-for-profit organizations that share our values to cure lung disease.  My partner this week is Jack Kelly, who is the CEO of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA).  He and others work to bring support and a cure to a very rare group of diseases that many in the pulmonary community have not heard.

There are specific burdens associated with the rare disease communities that need special attention. Diagnosis is often delayed, and physicians are sometimes at a loss to tell patients much about their disease because the disease may be the first presentation the physicians have ever seen.  Internet myths are sometimes hard to dispel, and geographic distance makes research more difficult.

When diseases are this rare, special partnerships bring access to care. An important milestone for the LGDA this year has been the selection by the National Institutes of Health, National Center for Advancing Translational Sciences, Office of Rare Diseases Research (NIH/NCATS/ORDR) to participate in a pilot program to develop a Global Patient Registry for lymphatic malformations including pulmonary lymphangiomatosis and Gorham-Stout disease.  Registration by our patient community in the International LGDA Registry for Lymphatic Malformations is vital for planned research to determine the causes and to develop effective treatments.

Similar to the involvement with the NIH and the ATS, the Lymphangiomatosis & Gorham's Disease Alliance has partnered with the LAM Foundation to encourage lymphangiomatosis patients to visit LAM clinics and their physicians.  With similar names, but different radiographic presentations, our education this week is to learn something about lymphangiomatosis and differentiate the features that are different from lymphangioleiomyomatosis (LAM).  We all believe that rare diseases are different. They require extra resources from society for both diagnosis and therapies. However, we are all richer by understanding the unique genetic risks, biosignatures, and clinical presentations that inform us about the biology of lung disease. Join us in learning about pulmonary lymphangiomatosis this week.

Charlie Strange, MD

Charlie Strange, MD          
ATS Assembly on Clinical Problems
Member, ATS Board of Directors

Jack Kelly

Jack Kelly
Lymphangiomatosis &
Gorham's Disease Alliance (LGDA)


The Lymphangiomatosis & Gorham’s Disease Alliance is a 501(c)(3) nonprofit foundation dedicated to patient support, advocacy, and research to find effective treatments and cures for those affected by the rare lymphatic malformations known as lymphangiomatosis and Gorham’s disease.