Author Archives: Admin

LGDA Awards 5th Founder’s Award

The Board of Directors of the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is quite pleased to announce that Judith Margolin, MD, is the 2017-2018 recipient of its special biennial Founder’s Award. Dr. Margolin is a pediatric hematologist-oncologist in Houston, on staff at Texas Children’s Hospital.  She received her medical degree from University of Cincinnati College of Medicine   Dr. Margolin is Co-Director

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Register for 2018 Patient & Family Conference

The 2018 Lymphangiomatosis & Gorham’s Disease Alliance Patient & Family Conference will be held on July 27 & 28, 2018, at the Hilton DFW Lakes Executive Conference Center in Dallas suburb of Grapevine, Texas. Planning is well underway for this exciting conference that you won’t want to miss! Those attending the conference will learn more about generalized lymphatic anomaly /

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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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Finding Help and Support

Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps.  Knowing that you can talk to someone that understands – helps.  Being able to share your experiences so others can learn from it – helps.  So why is it still the case that after being diagnosed with a rare disease you are

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LGDA Represented at Rare Diseases Day 2018

On February 24, 2018, Texas Children’s Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular

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Join the Million Dollar Bike Ride! May 20, 2018

The LGDA is proud to participate in Penn Medicine Orphan Disease Center’s 2018 Million Dollar Bike Ride, to be held on May 20, 2018 in Philadelphia. This year, the LGDA is joining forces with the Lymphatic Malformation Institute (Team LGDA/LMI) with a goal to raise $50,000.  This is a very special fundraising event.  Penn will match our donations dollar-for-dollar –

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Dine To Donate

Fundraising on behalf of the LGDA doesn’t require you to participate in a race or ride, host a dinner auction, put together a golf tournament – it can as simple as passing out a flyer or spreading the word on social media!  There are many restaurants who offer a “dine to donate” night.  You and the restaurant choose a date

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LGDA Hosts First Non-Event Fundraiser

  You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for good weather and crossing our fingers people find time

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