Category Archives: Latest News

Assessing Care Experience for Adult Patients with Vascular Anomalies

As the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking. We have developed a survey to gather your experiences as

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Coagulopathy in GLA/GSD/KLA

Presented by Judith F. Margolin, MD, Texas Children’s Hospital, Houston, TX Patients and their families face a veritable alphabet soup of acronyms starting with diagnoses (GLA/GSD/KLA), including diverse tests for diagnoses and monitoring (e.g., PT, PTT, Factors I-XII, d-dimers, DIC, LIC), and culminating with a host of procedures and drugs (generic and brand names)! Many of these terms, drugs, and

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2 Fundraisers in Dordrecht, the Netherlands for #LGDAwareness Day 2018

Cruising for Ella One of the fundraising events taking place for #LGDAwareness Day is Cruising for Ella on May 25th. This is a spectaculair experience from the water while watching old steam ships come by. Dinner and drinks included! Register: varenvoorella@gmail.com. Live for Ella Three bands from the Netherlands will give a benefit concert on the 31st of May at

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#LGDAwarenessDay Event in the Netherlands

On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to visit from 1-6pm. The family spoke with visitors at a

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Birthday Party Raises Over $3300 for LGDA

The family of a Canton, Ohio, area boy with GLA/lymphangiomatosis celebrated his 3rd birthday by hosting a fundraiser to benefit the LGDA. About 150 people attended the event on July 29, 2017, hosted by Linda Sutherland, the boy’s aunt, who provided the following description of the event: We started out by creating an invitation to our Birthday Bash/Fundraiser to honor

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