News

A mother’s view on lymphangiomatosis

Lucia Nanetti from Italy has a son with lymphangiomatosis. She wrote the following: “According to her (the Lymphangiomatosis) you could not do sport, run, tire yourself because your lungs do not allow it. For her, you had to be sold out 6 years
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Join the LGD Alliance Europe General Meeting

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 y
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Varen voor Ella

Tot onze teleurstelling moeten wij mededelen dat Varen voor Ella is geannuleerd. Er zijn helaas te weinig aanmeldingen en het financiële risico voor de stichting wordt te groot om verdere aanmeldingen af te wachten. Wij vinden het enorm jammer en he
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Living with the challenges of lymphangiomatosis

Tracy Milne and her son Alfie share their story on facing the challenges of living with lymphangiomatosis head on (page 58). Later in the article Dr. Michael Dellinger tells about his research at the Lymphatic Malformation Institute (LMI). Go to the
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Without patient participation, research cannot be done

RUDY Study UK For anyone that received an invitation to join this study through the LGDA registry but haven’t quite got round to signing up, please take five minutes to listen to an interview with Dr. Kassim Javaid talking about what the Rudy S
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GREAT ORMOND STREET HOSPITAL RESEARCH NEWS

A sequencing panel for lymphangiomatosis samples arrived today at GOSH, and the experiment will be running soon. This takes a bit of time to run and quite a bit of time to analyse but we wanted to share this piece of exciting news with our patient co
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Video explains ERN’s

This video explains European Reference Networks. One of those ERN’s is VASCERN. Ange van der Velden from the LGDA Europe participates as a patient representative in the Patient Work Group of VASCERN.  
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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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