Rare Lung Disease

HomePatientsLung Disease Week at the ATS2016 ▶ Rare Lung Disease
Rare Lung Disease Week

Rare Lung Disease Week

Welcome Message

Welcome to "Rare Lung Disease Week at the ATS" which is cosponsored with the Lymphangiomatosis and Gorham's Disease Alliance (LGDA) and other patient advocacy organizations that participate in the ATS Public Advisory Roundtable (PAR). Rare Lung Disease Week provides an opportunity for patients and families who are impacted by rare pulmonary disease to increase awareness of these conditions among physicians and the general public.

Rare diseases provide unique challenges for patients and caregivers. Delays in diagnosis and diagnostic confusion are distressingly common. Once the diagnosis is made, patients often have difficulty finding expert care. Hope derived from research is in short supply for many rare disease communities.

The ATS and its PAR partners are committed to promoting progress in the awareness, understanding, and treatment of rare lung diseases such as lymphangiomatosis (generalized lymphatic anomaly(GLA)) and Gorham-Stout disease (GSD). Our common goal is to forge an effective alliance between patients, families, researchers, clinicians, and funding agencies. Beyond meeting the compelling needs of individual patients with rare lung diseases, insights gained from rare disorders promises to inform the treatment of more common conditions as well.

 

Francis McCormack, MD

Francis McCormack, MD
Taylor Professor and Director
Division of Pulmonary, Critical Care and Sleep Medicine
University of Cincinnati College of Medicine
Member, American Thoracic Society

 

Jack Kelly

Jack Kelly
President, Lymphangiomatosis & Gorham's Disease Alliance
Member, ATS Public Advisory Roundtable

 

ATS Rare Lung Disease PARTNER
The LGD Alliance

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The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham's disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Alliance is committed to providing support to members of the patient community and their families; education for the community, professionals, and the general public; and hope to those affected by these rare lymphatic malformations.