Educating patients, their families, healthcare professionals, and policymakers is at the core of our mission to improve patient care.

Education is the thread that links all the goals of the LGDA and is at the core of our mission to improve patient care by promoting research that will identify effective treatments and a cure for these diseases. Our mission centers on educating patients and their families, the professionals involved in their diagnosis and treatment, the legislators who set policy regarding public funding for research (and in some cases treatment), and making researchers and the general public aware of these diseases and how the patients and families are affected. Education is critical. Without it nothing changes for our patients and their families.

The LGDA strives to provide educational information that is relevant to patients and professionals alike, by seeking out informative materials and providing links to those resources through our web site and newsletters, as well as creating original articles for these and other publications. In addition to providing information specific to lymphangiomatosis and Gorham’s disease, we are building a web-based library of articles on such topics as anatomy and physiology to help patients understand how the various body systems work normally so it is easier to understand how and why these systems are damaged by these diseases.  And we regularly add articles to our blog about things like diagnostic tests, procedures, dealing with insurance companies, and the resources that are available for patients and families.

Knowledge is power. Our goal is to help provide you with the knowledge you need to feel confident in the decisions you make on this journey. We hope you will find what you need here. If there is a topic about which you would like more information, or information you would like to share with others, please send an email to us at and we will be happy to help you.


Learn Online Through Our Web Pages

What is Gorham’s disease?

Bone Biology

What is lymphangiomatosis?

The Lymphatic System

Medication Information

Nutrition & Chylous Effusions

Reported Complications

Finding a Physician

Learn & Share Online with Our Blog

Advocacy News

Research News

Patient & Family Resources

Living with lymphangiomatosis & Gorham’s