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Lymphangiomatosis & Gorham's Disease Alliance (LGDA)

Philanthropic Fundraising Services
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    Tracy Milne LGDA - Lymphangiomatosis and Gorham’s Disease Alliance
    • Greater Aberdeen Area
    • Rising Star
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    Michael Kelly Executive Director at Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
    • Akron, Ohio, United States
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    Alison MacLeod M.S. Candidate in Genetic Counseling at Boston University and Educational Associate at Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
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    Lisa Klepper Director of Patient Programs and Patient Registry at LGDA
    • Waxahachie, Texas, United States
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    Louise Murgia Seasoned Director & Manager | Innovative Leader | Industry Influencer
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Overview

The LGDA is dedicated to improving the quality of life of patients with complex lymphatic anomalies by providing patient support and education; promoting and supporting basic science and patient-centered clinical research that will improve understanding of CLAs and establish best practices for their diagnosis and management; and advocating for public policies that benefit those living with these rare lymphatic diseases. Complex lymphatic anomalies (CLA) is an umbrella term which currently includes 4 overlapping, lymphatic-system maldevelopments resulting from somatic mutations in PIK3/mTor and RAS/MAPK signaling pathways: generalized lymphatic anomaly (GLA), kaposiform lymphangiomatosis (KLA), central conducting lymphatic anomaly (CCLA), and Gorham-Stout disease (GSD). Outdated terms for these diseases include lymphangiomatosis and lymphangiectasia.