About the Alliance
Founded by Jana K. Sheets, a patient, in 2007, the LGDA is a 501(c)(3) nonprofit incorporated in the United States and serving a worldwide community of patients, many of whom are young children, and their families. The LGDA:
- provides information and a support network for patients and their families;
- distributes information to patients, the public, the medical community, and the media;
- promotes and supports basic science and patient-centered clinical research that will improve understanding of these diseases and establish best practices for their diagnosis and management; and
- advocates for public policies that benefit those living with these rare lymphatic diseases.
The Board of Directors has established that the LGDA be focused on patient support, education and outreach; supporting scientific and clinical research; and building partnerships that advance the mission.
The mission of the LGDA is to bring hope to and improve the quality of life of patients with generalized lymphatic anomaly (GLA), also known as lymphangiomatosis, Kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) by providing support to members of the patient community and their families; education for the community, professionals, and the general public; and supporting research that will improve understanding of these diseases and establish best practices for their diagnosis and management.
Activities & Goals
- Provide opportunities for research in clinical and basic science aspects for lymphangiomatosis and Gorham’s disease.
- Educate medical professionals to better understand lymphangiomatosis and Gorham’s disease.
- Educate patients and family members about GLA/lymphangiomatosis, Kaposiform lymphangiomatosis (KLA) and Gorham-Stout disease (GSD) by providing workshops and literature, and other resources to better understand the disease. Assist patients and their family members by providing general support, a directory of doctors, and an online patient forum.
- Increase public awareness and distribute comprehensive information about these diseases to patients, the medical community, the public, and the media.
- Promote and support public policies that address research and healthcare needs of the lymphatic malformation community, with particular focus on lymphangiomatosis and Gorham’s disease.
- Identify and attract individuals, corporations and foundations, and granting agencies interested in financially supporting research, patient programs, and the website for lymphangiomatosis and Gorham’s disease.