Rare Lung Disease II

HomePatientsLung Disease Week at the ATS2012 ▶ Rare Lung Disease II
Rare Lung Disease Week II at the ATS


Welcome Message

The American Thoracic Society is pleased to partner with the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) for Rare Lung Disease week 2012. This is the second time this year that the ATS Lung Disease Weeks initiative is focusing on rare lung diseases. This Rare Lung Disease Week provides an important opportunity to bring much needed attention to rare conditions such as lymphangiomatosis, a condition of abnormal lymphatic development; and of Gorham's disease, a condition affecting the pleura and bones which can persist through life or lead to early death.

Many people with rare lung diseases such as lymphangiomatosis and Gorham's disease are misdiagnosed or never diagnosed.  Because public attention and funding are often focused on more common lung conditions and problems, more education and awareness is sorely needed for these uncommon conditions. There are, however, compelling patient stories that support the need for us to work together to understand the biology, support patients and families and strive to develop treatments. Additionally, insights from rare diseases can often further our understanding of the development and treatment of more common disorders, thus promoting an improved quality of life for a larger number of people.

The ATS strongly supports collaboration of patients, families, physicians, and scientists to further research, education, and resources for those with rare diseases. The passion and knowledge of those with personal experience of Gorham's Disease or lymphangiomatosis drives the investigation of scientists and physicians to work towards a cure. The ATS is committed to promoting awareness of these diseases and funding investigation along with our Public Advisory Roundtable partner, the Lymphangiomatosis and Gorham's Disease Alliance.


Carolyn Welsh, MD          
Past Chair, 
ATS Council of Chapter Representatives


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.


Disclaimer: "The ATS Lung Disease Week Web site is designed for educational purposes only. You should not rely on this information as a substitute for personal medical attention, a diagnosis from a physician, or direct medical care.  If you are concerned about your health or that of a family member, please consult your family's healthcare provider immediately. Do not wait for a response from our members, staff or partners."