Category Archives: Awareness

#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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Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text.   Family from Dordrecht asks for awareness of rare disease Fifteen-year-old

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2nd International Conference on GLA & GSD

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were proud to host the 2nd International Conference on Generalized Lymphatic Anomaly and Gorham-Stout Disease. The conference was held at the W Hotel – Buckhead in Atlanta, GA from June 10-11, 2016. The conference was chaired by Dr. Ionela Iacobas (Texas Children’s Hospital) and Dr. Michael Dellinger (Research

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Snapshots of the Data

Since the International LGDA Registry for Lymphatic Malformations (LGDA Registry) first went online more than 200 patients living on 6 continents have joined. The charts in this post highlight some of what we’ve learned so far about these participants’ diagnoses; what percentage have disease in the chest, bones, abdomen, pelvis and skin; and how many report having disabilities related to

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Rare Lung Diseases Consortium

The recently formed Rare Lung Diseases Consortium (RLDC) is holding a planning meeting in July 2015 to prepare for a national summit of all patient advocate organizations and the specialists in pulmonary science and medicine anticipated for 2016. The RLDC is a unique collaboration among patient organizations, clinical investigators and the National Institutes of Health working together to accelerate clinical

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