Tag Archives: Education

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

» Read more

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

» Read more

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

» Read more

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

» Read more

Rare Disease Day 2013

  For the third consecutive year the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is participating in the Rare Diseases Day Awareness Event at the University of Florida, Gainesville.  Along with Dr. John D. Reith, Professor and Director of the Bone Pathology Lab, UF/Shands, the LGDA inaugurated this event in 2011 by hosting an information table on Gorham-Stout syndrome and other

» Read more

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

» Read more

Warrior Alfie Starts to School

Alfie Milne’s parents, Mark and Tracy Milne, generously shared his story on our website earlier this year. At the time Alfie had been on Rapamune/sirolimus for a few months and had just received his walking frame. Now, Alfie has been on the drug for almost a year, since September 2011, and is doing remarkably well. “The change in his health

» Read more

Hagerstown Family Shares Story of Daughter’s Battle with Lympangiomatosis

  By MARIE GILBERT marieg@herald-mail.com 3:32 p.m. EDT, August 18, 2012* Most days, Alli Rogers is in pain. This is the reality of the young woman’s life as she battles a rare disease — one for which there is no cure. She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood

» Read more

Founder’s Award

Dr. Denise Adams, Recipient of the LGDA’s Founder’s Award The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce that it made its 2nd Founder’s Award to Denise Adams, MD, Professor, UC Department of Pediatrics, Fellowship Director, Division of Hematology/Oncology, Medical Director, Comprehensive Hemangioma and Vascular Malformation Clinic, Cincinnati Children’s Hospital Medical Center. Jack Kelly, president of the LGDA,

» Read more

LGDA at the ATS International Conference

Each year at the International Conference of the American Thoracic Society, the Public Advisory Roundtable hosts a day-long Patient-Family Forum where patients with chronic lung diseases and their families can share experiences with pulmonary doctors and one another, learn about how to manage their symptoms, and the latest in research and treatment for a variety of diseases. At the 2012

» Read more
1 2