Category Archives: Latest News

#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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Rare Disease Day in Scotland

Alfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event:   When your child is given the diagnosis of lymphangiomatosis,

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Michigan Rare Disease Day Event

Advocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan.  This Council will give rare disease patients a voice in state government and provide educational

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