The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) is a community-led 501(c)3 non-profit working to improve the lives of those with complex lymphatic anomalies: GLA/lymphangiomatosis, Gorham-Stout Disease (GSD), Kaposiform lymphangiomatosis (KLA) and central conducting lymphatic anomaly (CCLA).
We serve people affected by CLA through programs of research, education, and advocacy by
• Providing up-to-date resources and a support network for patients and families
• Working to build a clinical network for patients of all ages
• Guiding and funding research by doctors and scientists
• Powering the LGDA Patient Registry, an IRB-approved study
For more about the LGDA, including educational resources, news and research updates, advocacy actions, events, and patient support, please visit us at lgdalliance.org.
Support Network
Our support programs include private online support groups using Facebook and regular online meetings hosted by community members. To connect with us or learn more about joining a support group, contact us by email at support@lgdalliance.org and follow us on social media @LGDAlliance (Facebook, IG, Twitter, LinkedIn).
Our Partners
In order to extend its international patient support and research efforts, the LGDA has established affiliate partner organizations in Europe and the United Kingdom. To learn more, visit LGDAlliance-Europe.
To further its mission to advance research that will improve diagnosis and treatment of Complex Lymphatic Anomalies (CLA), the LGDA works closely with the Lymphatic Malformation Institute (LMI). The LMI was established in December, 2010, and is focused, as a whole, on advancing the understanding of the lymphatic system and, specifically, advancing the understanding of the complex lymphatic anomalies (CLAs), including Generalized lymphatic anomaly (GLA)/Lymphangiomatosis, Gorham-Stout disease (GSD), Kaposiform lymphangiomatosis (KLA), and Central Conducting lymphatic anomaly (CCLA).
The LGDA and the LMI share the goal of finding cures and treatments for these life-threatening disorders that have received very little attention from the scientific community in the past. The LMI seeks to fill this critical gap by identifying, organizing and funding research studies by medical and research professionals, and also working closely with other foundations with similar objectives.
We're part of the Chan Zuckerberg Initiative's (CZI) Rare As One Project, a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts.
