LGD Alliance - Europe soon to be registered
The Lymphangiomatosis & Gorham’s Disease
Alliance will soon have official organisational 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. The European
affiliate will include founding members from Denmark, France, Germany, Finland,
and Spain. We expect members to
participate from many other countries in 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”, said 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 organised 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 getinvolved@lgdalliance.org, 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 titta_a@yahoo.com
For the Organising
Committee
LGD Alliance – Europe
Titta
Antilla, Helsinki Finland
Acting Chair