Beginning with its very first award of $30,000 to Children’s Hospital of Philadelphia (CHOP) in April 2011, the generosity of donors like you has made it possible for the LGDA make numerous investments in support of research efforts to find the cause, and to develop better diagnostic methods and treatments for lymphangiomatosis and Gorham’s disease. Important funding highlights:
- 2012 – Rare Bone Disease Research Summit at Johns Hopkins University Medical Center
- 2013 – 1st International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Syndrome
- 2014 – Inaugural International LGDA Patient & Family Conference in Dallas, Texas
- 2015 – $200,000 in Funding for 3 Major Research Initiatives
- 2016 – 2nd International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease in Atlanta, Georgia
A major project funded by the LGDA is the International LGDA Registry for Lymphatic Malformations. Established in 2012, the LGDA Registry is a secure, encrypted internet-based information database for researchers and clinicians, as well as an information network for individuals with lymphangiomatosis and Gorham’s disease, and their families. LGDA Registry collects and analyzes information about patients with lymphangiomatosis and Gorham’s disease. To ensure complete protection of patients’ identity and privacy, all patient information contributed to the registry is de-identified. The Registry is essential in expanding the basic knowledge about these diseases and their impact on patients and families; the Registry assesses gaps in service; promotes access to care; supports the development of best standards of practice for diagnosis and clinical management; and, very importantly – connects families to emerging research opportunities.
The second major investment by the LGDA is the patient and family conference. The first conference in 2014 was a great success and it is time to host another. There is much progress to share with the community and a conference allows patients, their families, and other experts to hear directly from the clinicians and scientists about the important work they are doing.
We need your financial support! These investments are critical to improving diagnosis and treatment of generalized lymphatic anomaly (GLA – also known as lymphangiomatosis) and Gorham-Stout disease (GSD) and providing education and support to those affected by these rare diseases, thus extending and improving the lives of patients around the world.
We have set a fundraising goal for 2018 of $250,000 to support these programs and other important work of the LGDA.
If you prefer to Donate By Mail:
Print and complete the Donor Information Form and mail it with your donation to the following address:
19919 Villa Lante Place
Boca Raton, FL 33434
NOTE: Make checks payable to the LGDA