Category Archives: Professional Resources

Discovering the Genetic Basis of Rare Diseases

Presented by Michael Dellinger, PhD, University of Texas Southwestern Medical Center DNA carries all of the instructions for the development of an organism. DNA is a long polymer made up of the building blocks, G, A, T, and C. Genetic mutations are changes to the sequence of DNA. Some genetic mutations are germline mutations (heritable), whereas other mutations are somatic

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Use of Bisphosphonates in GLA/GSD/KLA

Presented by Yaser A. Diab, M.B.B.S., Children’s National Health System, Washington, DC Complex lymphatic anomalies including Generalized Lymphatic Anomaly (GLA), Gorham–Stout disease (GSD), and Kaposiform Lymphangiomatosis (KLA) can involve the bones leading to bone destruction which can negatively impact the quality of life for patients with these lymphatic anomalies. At present, no standard treatment for these diseases exist, and due

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Use of Sirolimus in GLA/GSD/KLA

Presented by Cameron Trenor, MD, MMSc, Vascular Anomaly Center, Boston Children’s Hospital Sirolimus has been FDA-approved since 1999 for immunosuppression but has many appreciated off-label uses, including for lymphatic disorders. Based on clinical study results and reported cases, sirolimus is often used for Gorham-Stout disease (GSD), generalized lymphatic anomaly (GLA)/lymphangiomatosis and other lymphatic conditions. Many lymphatic malformations are associated with

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Vascular Anomalies Special Interest Group

The Vascular Anomalies Special Interest Group’s (SIG) mission is to improve the care of children and young adults with vascular anomalies through multicenter collaborative research. The goals of this special interest group include: current continued education to ASPHO membership in the diagnosis, treatment, and management of patients with vascular anomalies multicenter collaboration to establish standards of practice for patients with

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ASBMR 2014 Annual Meeting

As a member of the Rare Bone Disease Patient Network (RBDPN), the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), and associate members of the RBDPN, participated in the National Bone Health Alliance/Rare Bone Disease Patient Network Workshop: Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases on September 11, 2014, in Houston, Texas. 

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Webinar: Pulmonary Complications of Lymphangiomatosis & Gorham’s

Update: If you missed the webinar on August 28, it is available for viewing on the ATS website.   August 24 – 30, 2014 For the third consecutive year, Lymphangiomatosis and Gorham’s disease are being featured as part of Rare Lung Disease Week at the ATS. The feature of the week occurs on Thursday, August 28 when the Lymphangiomatosis and

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Patient & Family Conference

With the registration at capacity, more than 110 patients and family members turned out for the very first Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference, held in Dallas, Texas, June 14-15, 2014. Attendees, including more than two dozen children, came from Europe, South America, and the United States and Canada. Five families attended who had lost a family

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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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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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