Tag Archives: advocacy

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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Community Event Supports Work of LGDA

5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something  to give support and hope to a young girl in town,  Maci Jeffries.   Maci is 11 years old and has been struck with Gorham’s disease,  a very rare disorder which can seriously affect the musculoskeletal

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Warrior Craft Project for 2013 Golf Outing

  To add a personal touch to the LGDA Golf Outing Fundraiser for 2013, we are issuing this invitation to Lymphangiomatosis and/or Gorham’s disease patients—Warriors as we call them in the LGD Alliance— to create an item (or items) on their own to be included in the raffle done in conjunction with the Golf Outing. Your contribution may be anything

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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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FAST Act

Washington D.C.—Recognizing that many patients either have no treatments available for their rare diseases or are using older therapies not designed for their disease and the need to update the Food and Drug Administrations decades-old Accelerated Approval regulation, Congressmen Cliff Stearns and Edolphus Towns on March 5, 2012, introduced House Resolution (H.R.) 4132, the bi-partisan bill known as the Faster

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