Welcome Message
Welcome to “Rare Lung Diseases 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 Diseases Week provides an opportunity for patients and families who are impacted by these conditions to increase awareness of them among physicians and the general public.
In addition to the direct medical burdens imposed by them, rare diseases also provide additional challenges. First, delays and confusion in diagnosis are distressingly common. Second, after a diagnosis is made, patients often can learn few details about a specific condition of which most physicians have little first-hand experience. Third, research funding generally is focused on common conditions that broadly impact the population. While understandable, the research community’s relatively slow progress in achieving greater understanding and improved therapies of more rare conditions can be extremely frustrating to patients and clinicians alike.
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) and Gorham-Stout disease. In addition to the compelling needs of individual patients with rare lung diseases, insights gained from greater understanding of them may ultimately be applicable to the treatment of more common conditions as well. The goal is to forge a powerful alliance between patients, families, researchers, clinicians, and funding agencies in order to optimize the diagnosis and management of rare pulmonary conditions.
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Jess Mandel, MD |
Jack Kelly |
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ATS Rare Lung Disease Partner
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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. |
