2018 LGDA Patient and Family Conference Report

Over the last weekend of July 2018, the LGDA hosted its second International Patient and Family Conference in Dallas, Texas.

Since its founding in 2007, the LGDA has had as a primary goal to bring together patients and their families, clinicians, and researchers to share experiences and knowledge that will help to improve understanding of generalized lymphatic anomaly (GLA), formerly known as lymphangiomatosis, Gorham-Stout disease (GSD), and kaposiform lymphangiomatosis (KLA), and to expand research that will improve outcomes for those suffering with these rare diseases.

Throughout the weekend there were many opportunities for patients and families to visit with one another, to see presentations from clinicians and researchers on a wide range of topics, to ask questions, and to learn how patients and families can help to move research forward.  This event provided a unique opportunity for attendees to be face-to-face with patients and families living with the same challenges, clinicians they may have known only through distant consultations, and researchers who have dedicated themselves to finding the answers necessary to develop methods to diagnose and better manage these very rare vascular anomalies.

The presentations were recorded and are available on our YouTube channel.

Click on the presentations titles below for more information and to view the video:

 

Structure and Function of Lymphatic System

Prof. Miikka Vikkula, MD, PhD

Differentiating the Various Rare Lymphatic Anomalies: GLA, GSD, KLA

Ionela Iacobas, MD

Role of Imaging in Diagnosis and Management of GLA, KLA, and GSD

Matt Hawkins, MD

Interventional Radiology – MR Lymphangiogram

Maxim Itkin, MD

The Multidisciplinary Team

Michael Briones, DO, and Rachel Swerdlin, MS, RN, CPNP

Use of Sirolimus in GLA/GSD/KLA

Cameron Trenor, MD, MMSc

Use of Bisphosphonates in GLA/GSD/KLA

Yaser A. Diab, M.B.B.S.

Coagulopathy in GLA/GSD/KLA

Judith F. Margolin, MD

Pulmonary Complications

David R. Spielberg, MD, MHSc

Discovering the Genetic Basis of Rare Diseases

Michael Dellinger, PhD

Directions in Research

Michael Dellinger, PhD