Tag Archives: Professionals

2016 ASPHO-VA-SIG Fall Meeting

The American Society of Pediatric Hematology-Oncology Vascular Anomalies Special Interest Group (ASPHO-VA-SIG) is composed of physicians and other health care professionals in North America who have interest in vascular anomalies, the large umbrella under which generalized lymphatic anomaly (GLA – previously known as lymphangiomatosis), kaposiform lymphangiomatosis (KLA), and Gorham-Stout disease (GSD) are classified. Representatives of advocacy groups such as the

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Diffuse Pulmonary Lymphangiomatosis Clinics

  A Partnership with LAM   One of the most difficult manifestations of lymphangiomatosis and Gorham’s disease to diagnose and manage is diffuse pulmonary lymphangiomatosis (DPL).  This manifestation involves the lymphatic system throughout the patient’s chest and has numerous clinical presentations.  DPL often is a slowly progressing lung disease that can lead to respiratory failure that can occur at any

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LGDA Establishes Patient Registry

Will Participate in Global Rare Diseases Patient Registry The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce the establishment of the International LGDA Registry for Lymphatic Malformations (LGDA Registry), a major goal of the LGDA since the organization’s founding. The LGDA Registry will be instrumental in accelerating the pace of basic and clinical research for the life-threatening disorders

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National Organization of Vascular Anomalies (NOVA) Bi-annual Conference

Recently the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) accepted an invitation from Karla Hall, Executive Director of NOVA, to attend the bi-annual conference of the National Organization of Vascular Anomalies at Cincinnati Children’s Hospital.  The gathering of patients and clinicians affected by a number of vascular/lymphatic disorders was a full day of presentations by specialists in treating and studying disorders

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Rare Bone Disease Research Summit – Johns Hopkins University

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA), and our research partner, the Lymphatic Malformation Institute (LMI), were among co-sponsors of the Rare Bone Disease Research Summit held recently at the Johns Hopkins University Medical Center in Baltimore. Gathered at the summit were some one hundred bone scientists, clinical researchers, oncologists, surgeons, patient support organizations, and representatives from the National Institutes

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Distinguished Achievement Award

American Thoracic Society – Public Advisory Roundtable Honors Member of LGDA Medical Advisory Council Each year at the International Conference of the American Thoracic Society the Public Advisory Roundtable (ATS-PAR) presents the William J. Martin II Distinguished Achievement Award to a person who exhibits a passion for patients, an impressive history in public service, innovative spirit, and outstanding leadership skills.

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First Concensus Meeting on Lymphatic Anomalies

  Led by the outstanding efforts of two members of the Medical Advisory Council of the LGDA—Denise M. Adams, MD, Medical Director, Hemangioma and Vascular Malformations Clinic at Cincinnati Children’s Hospital, and Steven J. Fishman, MD, Co-Director, Vascular Anomalies Center, Children’s Hospital Boston—the first Consensus Meeting on Lymphatic Anomalies was held at Children’s Hospital Boston on February 4, 2011. Patients

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