Author Archives: Admin

Orphan Drug Heroes

World Orphan Drug Congress USA Heroes Wall           For 4 years the World Orphan Drug Congress USA has sought inspiration from rare disease patients to continue with the research and discovery for orphan drugs. This year WODC USA asked rare disease patients and advocacy groups who inspires them and selected the 30 heroes of the sector.

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ATS Hill Day

LGDA Participates in ATS Hill Day 2014 In late March, ATS officers and patient representatives of the Public Advisory Roundtable (PAR), of which the Lymphangiomatosis & Gorham’s Disease Alliance is a member, visited Washington, D.C., to advocate for respiratory health as part of ATS Hill Day 2014. Events like the ATS Hill Day provide important opportunities for rare disease advocates

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Meeting Report

1st International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are pleased to share the publication of the Conference Report on the Proceedings of the First International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome. The conference was hosted by the LMI and the LGDA

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