Association Belge du Syndrome de Marfan

Hello everybody,

A quick intro for the ones who don't know me...
I'm Lauriane JANSSEN, and I'm a member of the ABSM (Belgian wallonian Marfan Association). Since last year, I am a member of the board of the EMSN (European Marfan Support Network) and I am the young adult group representative, or something like that. :)

As most of you know, young adult meetings have always been organized at the same place and time that the adults meetings, and we had time to discuss some issues in our group while the adults were taling about more specific EMSN stuff. We attended the medical presentations, and tried to do something nice and different than the adults just to be together, with only young marfan people (18-28yrs).

Next year, no adult EMSN meeting will be organized, but we would like to organize a young adult only meeting...

What would that would adult meeting be like? ... That depends on you!

The basic ideas would be:

• Having a time for ourselves, for around the same duration as a "normal" EMSN meeting, so approximatively form a thursday afternoon until the sunday morning.
• We will have som discussion time on the friday morning, to get each other known and have the opportunity to discuss some Marfan issues
• The friday afternoon would be some more leisure activities according to the place we are in...
• The saturday morning will be some practical workshop on some medical issues (ideas are coming), but not just sitting and listening anymore! :D
• Saturday evening and night... leisure ;)
• Sunday, close and evaluation of the meeting

Of course, we will also have time to discuss all the topics we want during the leisure activities.

My questions are now:

• Would you be interested in this kind of activities?
• Would you like to be in the mailing list concerning the preparation of this meeting?
• Do you have any ideas and suggestions?

Concerning the price and so on, we will try to get some fundings to have the cost being as low as possible, so that this is not a reason not to come! :)

If you know young adults (we are talking about marfans between 18 and 28 yrs) that would be interested in this, feel free to forward this messages!

Thanks a lot,

and... I hope to hear from you very soon!

Lauriane Janssen

jeunes@marfan.be