Nieuws

GLA/GSD/KLA clinics for European patients set

Due to the success of two previous expert clinics organized by Dr. Lopez-Gutierrez at La Paz Hospital in Madrid (Spain), more clinic dates have been announced.   The first date is Thursday, Dec. 20, with the second in January (date to be announc
Read More

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
Read More

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
Read More

Benefietavond tvv vzw LGD Alliance Belgium

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 •
Read More

Live for Ella – Party with a purpose

Live for Ella is een benefietconcert op donderdagavond 31 mei a.s. in het Dolhuis in Dordrecht met medewerking van een paar geweldige artiesten. Wat te denken van TRAUDES (3FM Talent 2018), Greenfield, Colibri de Band en de WTF Deejays. Live f
Read More

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
Read More

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
Read More

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
Read More

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
Read More

Enorm moe maar met een zéér goed gevoel sluiten wij ons tweede benefiet-weekend af. Wij hebben er wederom ontzettend van genoten. Hopelijk jullie ook? Dank je wel, Sticky Notes, voor de mooi muziek en de Nonsens Alliantie voor de lach in de zaal. M
Read More