Gorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels. In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and
Physician Guide for GLA, GSD, KLA and CCLA
In June 2016 the LGDA and its partners, Lymphatic Malformation Institute and Alfie Milne Lymphangiomatosis Trust, brought together 52 physicians from 16 specialties to develop a consensus-based guidelines for comprehensive evaluation of the complex lymphatic anomalies (CLA) generalized lymphatic anomaly (GLA) previously called lymphangiomatosis, Gorham-Stout disease (GSD), kaposiform lymphangiomatosis (KLA), and central conducting lymphatic anomaly (CCLA). The results of that effort have now been published in the journal Pediatric Blood & Cancer.
Read the abstract here: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28036
Advocacy Network for Vascular Anomalies Formed
The LGDA and Klippel-Trenaunay Support Group have joined together to form the Advocacy Network for Vascular Anomalies (ANVA). Through this new effort ANVA member organizations will present a unified voice for all vascular anomalies patients to facilitate collaboration among clinical and research networks. Advocacy organizations for vascular anomalies patients interested in joining ANVA may contact us for more information.
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Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone
All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission.
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