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Up-to-date information on the activities of the Lymphangiomatosis & Gorham’s Disease Alliance, as well as news and events of interest to patients and professionals.

 

 


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 ...
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Team LGDA & LMI tops $100K at 2017 MDBR

The LGDA and its research partner, Lymphatic Malformation Institute (LMI), joined together again on May 20, 2017, to take part in the Million Dollar Bike Ride to raise awareness and critical research dollars. This is the third year for Team LGDA to participate in the event. Thanks to its dedicated ...
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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 ...
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5 Words on Being Rare

World LGDA Awareness Day The LGDA and its worldwide partners, LGDA-Europe and Alfie's Trust, are pleased to announce the establishment of an official Worldwide Awareness Day of May 26. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day ...
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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: ...
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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 ...
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Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf
Register NOW for 1st LGDA Patient & Family Conference – June 2014 – See more at: https://www.lgdalliance.org/2013/11/conference2014/#sthash.NpIjHijR.dpuf

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