Rare Lung Disease

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Information for Patients

Rare Lung Disease Week

Lung Information for Patients

 

What is lymphangiomatosis?

Lymphangiomatosis, recently classified as generalized lymphatic anomaly (GLA), can occur at any age, but the incidence is highest in children and teenagers. Signs and symptoms are typically present before the age of 20 and the condition is often under-recognized in adults.

What is Gorham's disease?

Gorham-Stout disease is extremely rare and may occur at any age, though it is most often recognized in children and young adults. The disease may stabilize after a number of years, go into spontaneous remission, or, in cases involving the chest and upper spine, prove fatal.

About the Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

Mission and goals of the LGDA.

Finding a Physician

The LGDA has compiled a list of medical specialists and expert centers around the world that have experience diagnosing and treating patients with different aspects of GLA (lymphangiomatosis), Gorham-Stout disease (GSD), and Kaposiform lymphangiomatois (KLA).

Patient Support  

A major component of the mission of the LGDA is patient support. This includes two very important programs: our patient matching program that helps patients and families connect with one another and our awareness program that helps to raise awareness of GLA, GSD, and KLA among professionals and the public.

Research Support

This year the LGDA and its research partner, the Lymphatic Malformation Institute (LMI) jointly awarded $200,000 in research grants for three important studies.

Research Opportunities

For more information about research opportunities in the study of rare lymphatic diseases please visit the website for the LGDA's research partner, The Lymphatic Malformation Institute,.

International Patient Registry

As part of its research support program, the LGDA established the International LGDA Registry for Lymphatic Malformations. The LGDA Registry is open to all patients interested in learning more about their disease and helping to establish the number of patients.

LGD Warriors

Learn about GLA, GSD, and KLA through the eyes of those affected—our Warriors—who in these pages graciously and openly share their experiences in order to help others. Written by patients and family members; caregivers and friends; and those who have lost loved ones, they offer the heart-felt perspective of those whose lives have been forever altered by these two diseases.

ATS Patient Information Series

The ATS Patient Information Series is a public service of the American Thoracic Society and its journal the AJRCCM (www.atsjournals.org). The information appearing in this series is for educational purposes only and should not be used as a substitute for the medical advice of one's personal health care provider. More Info

ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilationbriefly describes respiratory diseases and the progress that is being made in the quest to find their cures. Chapter on Rare Lung Diseases.