News

LGDA Awareness Day

May 26 2017 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
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European Reference Network: VASCERN

Half a million people in Europe are diagnosed with a rare disease every year. No country can meet this challenge alone. European Reference Networks are virtual networks that bring together experts from across the EU. Together, they will tackle comple
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VASCern is now an official European Reference Network!

Imagine if the best specialists from across Europe could join their efforts to tackle complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. That’s the purpose of the Europe
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1st Patient and Family Conference LGDA Europe

A little less than a month ago the LGDA Europe held its first meeting in Leusden, the Netherlands. A total of 11 patients and 31 family members got to meet each other, sharing their stories and listening to the sessions at the conference held in Leus
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Skype call for European volunteers

All volunteers will meet again online next week Sunday, October 2nd, 20:00h (CET). On the agenda are general plans to find more patients in the EU, stimulating research and the first patient conference 11-13 November. We are still open for new volunt
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First European patient conference, November 2016

We are proud to announce our first European patient meeting will be in November 11-13 in Leusden, Netherlands. A unique moment for patients in Europe and the LGD Alliance Europe. There will be time to meet and get to know each other. And on Saturday
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Meet Lazlo – a Dutch hero

Dutch hero Lazlo shared his story in 2012 on Dutch TV. Now he shares it with the world in the hope to reach out to find more patients. Our thanks goes out to broadcasting company BNN, Zodiac Nederland, the program Je zal het maar hebben (this means:
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Fellowship Maria Gnarra

In February this year, Alfie’s Trust funded a 6 week Fellowship to allow Maria Gnarra to join the Dermatology Department at Great Ormond Street Hospital to work on clinical projects on paediatric vascular and lymphatic anomalies. Maria Gnarra
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Million Dollar Bike Ride funds three studies

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the three projects selected to receive the LGDA-LMI 2015 MDBR Rare Disease Research Grants. The LGDA and LMI joined to
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Put on your running shoes! RunBalmoral

With only 87 days until Runbalmoral 2016, we urge you to sign up now so not to be disappointed (www.runbalmoral.com to register). Places are going fast. Join Team Alfie and help to raise money to improve the lives of those suffering from Lymphangioma
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