News

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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Skype meeting next Sunday

Next Sunday the LGDA Europe volunteers will have a Skype meeting at 20.00 CET. Would you like to join? Every two months interested people and regular volunteers meet on line and discuss our ambitions and research plans. We invite anyone to join the c
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February 29, 2016 is Rare Disease Day! Read more about this year’s theme and slogan

Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard 2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day. On 29 February 2016, people living with or affected by a rare disease
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Dutch patient meeting

In the fall of 2015 patients and their families have met each other.    
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