Rare Lung Disease

HomePatientsLung Disease Week at the ATS2018 ▶ Rare Lung Disease
Rare Lung Disease Week

Rare Lung Disease Week

Welcome Message

Rare lung diseases are a collection of different pulmonary conditions that typically affect < 10 people per million in the general population. Examples of these diseases include, but are not limited to, pulmonary alveolar proteinosis (PAP), lymphangioleiomyomatosis (LAM), and lymphangiomatosis (a condition distinct from LAM).

As a result of their infrequency, few physicians have real-world experience in both identifying and treating these conditions, often leading to misdiagnoses of patients for many years. Similarly, finding financial support for research can be difficult secondary to the rarity of these conditions.

Key to the success in making progress in both clinical care and research for rare lung diseases has been the creation of a network of researchers, physicians and patients who are working together to promote awareness, increase research funding, and establish rare lung disease centers of excellence. This has been the longstanding goal of the Rare Lung Diseases Consortium (RLDC) which aims to facilitate a unique collaboration among patient-based organizations such as the LAM and PAP Foundations, clinical investigators, and the National Institutes of Health. By helping to identify academic centers with expertise in specific rare lung diseases and making this information readily available to patients all over the world, we hope to both organize the patient population to participate in cutting-edge research and clinical trials while also providing them access to the expert care that they deserve.

Importantly, professional societies such as the ATS have partnered with our Public Advisory Roundtable (PAR) colleagues to increase awareness and provide opportunities for education and patient advocacy within all of the rare lung diseases. It is through these efforts that we can connect patients and their families with each other and with the healthcare centers that can give them "a breath of hope."

 

Tisha Wang, MD

Tisha Wang, MD
UCLA, Dept. of Pulm. and Critical Care Medicine
Vice-chair, Education Committee, 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.