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julio 2018

Patient & Family Conference

julio 27, 2018 @ 00:00 - julio 28, 2018 @ 23:59
$75

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 / lymphangiomatosis (GLA), Gorham-Stout disease (GSD), and Kaposiform lymphangiomatosis (KLA) from leading clinicians and researchers who will speak on topics including…

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septiembre 2018

Benefietavond tvv vzw LGD Alliance Belgium

septiembre 21, 2018 @ 18:30 - 23:30
GC Kadanz Wuustwezel, Achter d'hoven
Wuustwezel, Belgium
+ Google Map

Na het succes van de vorige edities wagen we ons nu aan een derde benefiet-weekend ten voordele van de vzw LGD Alliance Belgium op vrijdag 21 en zaterdag 22 september 2018. Het programma voor beide avonden is hetzelfde: • 18u30 - Receptie • 19u30 - Muzikaal akoestisch voorprogramma door Sticky Notes • 20u00 - Presentatie vorderingen vzw LGD Alliance Belgium • 20u15 - Pauze • 21u00 - Optreden van 2 comedians: Wilfried Van der Elst en Ann Helena Kenis Voor…

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Benefiet tvv zvw LGD Alliance Belgium

septiembre 22, 2018 @ 18:30 - 23:30
GC Kadanz Wuustwezel, Achter d'hoven
Wuustwezel, Belgium
+ Google Map

Na het succes van de vorige edities wagen we ons nu aan een derde benefiet-weekend ten voordele van de vzw LGD Alliance Belgium op vrijdag 21 en zaterdag 22 september 2018. Het programma voor beide avonden is hetzelfde: • 18u30 - Receptie • 19u30 - Muzikaal akoestisch voorprogramma door Sticky Notes • 20u00 - Presentatie vorderingen vzw LGD Alliance Belgium • 20u15 - Pauze • 21u00 - Optreden van 2 comedians: Wilfried Van der Elst en Ann Helena Kenis Voor…

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diciembre 2018

Expert Clinic GLA/GSD/KLA

diciembre 20, 2018
La Paz Hospital Madrid, Spain + Google Map

Dr. Lopez-Gutierrez at La Paz Hospital in Madrid (Spain) offers an expert clinic for our patients. What can you expect as a patient? Dr. Lopez-Gutierrez and his team will review your clinical current status, recent x-ray exams, genetic background (even free genetic studies on patients with no mutations diagnosed are possible) and a therapeutic evaluation. (In case of patients needing special X-ray exams - lymphatic MRI and intranodal lymphangiography, these will have to be organized at a later date). In order…

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febrero 2019

Rare Disease Day 2019

febrero 28

And the Rare Disease Theme 2019 is: Bridging Health and Social Care Rare Disease Day 2019 is on 28 February! Be part of a global movement calling for the coordination all aspects of care to achieve better lives for people living with a rare disease.

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marzo 2019

General Meeting LGD Alliance Europe

marzo 3 @ 20:00 - 22:00

Always wanted to join, but not sure how? This is your chance to see how the LGD Alliance Europe tries to offer support, educate people and offer hope for the future by looking into research. The board and team leaders meet monthly. But four times a year we invite you to listen, discuss and help us be the best we can. So, join us for our quarterly meeting with our volunteers on Skype. Convinced? Send an email to info@lgdalliance-europe.org and…

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mayo 2019

LGD Awareness Day 2019

mayo 26

Mark your calendars! LGDA Europe and our American partner LGDA are pleased to announce the establishment of an official Worldwide Awareness Day of May 26. Purpose The purpose of this day: Raise awareness Share experiences May 26 was selected for the awareness date in honour of LGDA Founder Jana Sheets, who was born on that day in 1974.   Actions Talk and listen to us. Make a donation. Share! Use #LGDAwarenessDay on Twitter!

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junio 2019

General Meeting LGD Alliance Europe

junio 2 @ 20:00 - 22:00

Always wanted to join, but not sure how? This is your chance to see how the LGD Alliance Europe tries to offer support, educate people and offer hope for the future by looking into research. The board and team leaders meet monthly. But four times a year we invite you to listen, discuss and help us be the best we can. So, join us for our quarterly meeting with our volunteers on Skype. Convinced? Send an email to info@lgdalliance-europe.org and…

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Million Dollar Bike Ride

junio 8

The 2019 Million Dollar Bike Ride (MDBR) is on Saturday, June 8, 2019 in Philadelphia! Save the date! The LGDA is already planning our 5th year of participation in the 2019 UPenn Million $$$ BikeRide.  Our riders’ efforts and our generous supporters have raised, with matching funds, more than $600, 000 for GLA/GSD & KLA research in the 4 years of our participation. Perhaps you will join us as a rider and/or supporter in 2019!  For further information contact John Fay, 2019…

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septiembre 2019

General Meeting LGD Alliance Europe

septiembre 1 @ 20:00 - 22:00

Always wanted to join, but not sure how? This is your chance to see how the LGD Alliance Europe tries to offer support, educate people and offer hope for the future by looking into research. The board and team leaders meet monthly. But four times a year we invite you to listen, discuss and help us be the best we can. So, join us for our quarterly meeting with our volunteers on Skype. Convinced? Send an email to info@lgdalliance-europe.org and…

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