Rare Lung Disease

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Rare Lung Disease Week

Rare Lung Disease Week

Welcome Message

Welcome to the first Rare Lung Disease week of 2017 with a focus on Lymphangiomatosis and Gorham’s Disease.   We are pleased to work with our PAR partner, Jack Kelly, who represents the Lymphangiomatosis & Gorham’s Disease Alliance. The ATS and PAR (Public Advisory Roundtable) continue to collaborate to provide shared opportunities in education, research, patient care and advocacy throughout the year.

Each year, the PAR has hosted patient information sessions at the ATS International Conference.  Starting with some introductory lectures, these sessions also include patient and family forums with experts in these rare diseases, including Lymphangiomatosis and Gorham’s Disease.  As these vascular malformations are quite rare, these are great opportunities to bring patients, families and experts together to discuss their care and advances in the field. 

We hope that you find this week helpful as the ATS and the LGDA (Lymphangiomatosis & Gorham’s Disease Alliance) partner to provide multiple opportunities for patient/family and clinician engagement.  During this week, information is provided both for clinicians and for patients/families.  Additionally, a webinar entitled, “Growth of Pulmonary Lesions in Children vs. Adults with Generalized Lymphatic Anomaly (aka lymphangiomatosis) and Gorham-Stout disease” will be delivered by Dr. Erik Eklund on Feb. 9 at 3PM EST, offering insights into the latest in care for patients with these rare lymphatic anomalies.  We hope that this information is helpful an increases awareness of these lymphatic diseases and opportunities for both clinicians and patients to seek further resources.

 

Francis McCormack, MD

Debra Boyer, MD
Associate Medical Director, Pediatric Lung Transplant Program
Assistant Professor of Pediatrics
Harvard Medical School
Member, ATS Board of Directors

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.