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LGD Alliance - Europe soon to be registered !
The Lymphangiomatosis & Gorham’s Disease Alliance will soon have official organizational status in Europe. We are moving on to establish and register Lymphangiomatosis & Gorham’s Disease Alliance - Europe, LGD Alliance - Europe, a not-for-profit sister association of LGD Alliance, spreading the activities and reaching towards the patients and families all across Europe.
“This development is a significant step in advancing the worldwide mission of the LGD Alliance – to improve the care of patients with lymphangiomatosis & Gorham’s disease, and to promote research that will lead to effective treatments and a cure”, explained Jack Kelly, President, LGD Alliance, Boca Raton, FL. “We have many patients in our rare disease community throughout Europe. LGD Alliance –Europe will be the beacon of ‘hope and help’ for all those afflicted with the orphan diseases: lymphangiomatosis/Gorham’s disease”, said Monique Schloupt, leader of A.L.E.G, the first Gorham disease association in France and Spain. The country for registration will be Finland; the field of activity and members will be scattered throughout Europe.
The first official meeting to establish the LGD Alliance - Europe will be organized as “chat meeting” through the internet-based program, Skype, to give an opportunity to all those interested from any part of Europe to participate. We also cordially welcome, as guests, others from around the globe who may be interested in our mission to participate and follow the meeting. Guests will have no voting privileges or rights. The meeting will be held on Wednesday 24th of March 2010 at 6PM Central European time. We warmly welcome everyone to get connected! You may contact This e-mail address is being protected from spam bots, you need JavaScript enabled to view it , three days prior to the meeting to be included in the participants of the meeting.
The primary matter for the Agenda of the meeting will be to take the official decision on establishing LGD Alliance - Europe and election of the first Chairperson and Executive Committee. We kindly ask anyone willing to be considered for nomination as Chairperson or into the Executive Committee to send their biography or Curriculum Vitae by 18th of March to Titta Antilla, Acting Chair, at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .
Respectfully submitted,
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