Webinars ?

[akita]

Hi all,

recently i browsed the informations of this forum - webside and came to a link with the webinar announcements.

Oh so sorry i cannot find the link again. Sitting in the National Library in Vienna, my Computer works not optimally for the internet. At home - my newer laptop had an electricity accident 2 weeks ago and the other one does not work very good, its only reserve..

I am interested in these webinars. Are they also for patients from outside of the USA and for people like me, that had a undiagnosed MDS for years and after the diagnosis a sort of medium-status between MDS and AML..and now cGVHD after SZT?

Where i can access easily the link to the webinar information?

Maybe other people also are interested in these upcoming internet-events following the this year ASH...

Thanks in advance for the links and answer...

Kind regards, Margarete

[Birgitta-A]

Hi Margarete,
Try this link:
https://live.blueskybroadcast.com/bs...1422&thx=post&
Kind regards
Birgitta-A

[akita]

Thanks, dear Birgitta!

If i get a registration, i wll try to prepare myself for the webinar. Are you interested that i post some studies here related to the topics from AHS which are dealed with in the webinars? Or propose specials studies for discussion.

But there is no need or special personal interest to discuss this here in the forum in advance. We also could as am alternative continue with the platelet threat which touches a major problem in mds and in this forum and is not so much emphazised in the two webinars, i suppose, the same with ICT and IO in relation to SZT..

Kind regards,

Margarete

[Birgitta-A]

Hi Margarete,
You know I always look at the webinars later - I don't feel that I have to ask anything myself but it is very interesting to hear the best reseachers in the world inform us about our disease.
Kind regards
Birgitta-A

[akita]

Hi Birgitta,

provided with your link i looked into several archived webinars. Very interesting. For the upcoming webinars i want to watch them, but i will not ask questions. It s interesting anyway. When you dont know the abstracts which will be reported, a realistic preparation is not possible except browsing all the studies for MDS at ASH 2010 quite a lot, it goes so fast in a webinar, so it seems that you must have prepared questions to have a sufficient result..

Kind regards,

Margarete

[Neil Cuadra]

Anyone who attends the MDS webinars can post feedback in the Marrowforums news thread about them.

[akita]

Just now i posted the Webinars in Facebook. There was no such announcement yet.

Kind regards,

Margarete

[akita]

Would it be ok to broadcast this webinar also in Vienna,Austria. A friend of mine has got a "videobridge"- studio and would open it for this purpose. At home i dont have sound on my laptop actually and so for my it is advanteous to go to my friends studio.

would it be also ok to invite some friends? Posting invitations in hospital ambulancies with mds - patients?

In Austria there does not yet exist a MDs-patients-support/self help group. The self-help organisation under www.myelom.at has started now with a program also for MDS Patients. This is a relatively big Austrian Support Organisation for Patients with Lymphoma and multiple Myelomas. There are almost no people in the small online forum of myeloma.at, which would not be able to provide much communication for new MDS patients joining the club. Ther have some really good events in every year, hematologists as contact persons and and peer-consultors, and a journal.

I talked recently with Elfi Jirsa, the Vicepresident of this club, also residing in Vienna like me, and she asked me, if i would help to build up some MDS patients-ressources in the frame of their club, as there is no another MDS experienced patient actually in this club. So i thought that it could be helpful to invite to a small meeting, watching together to the webinar on 19.1.2011.

My voluntary work in this organization is not yet fixed, but anyway i want to do something, making contacts with mds patients. There is already a nice german speaking internet-forum (lil) which can be offered to these patients - and of cause i could tell them about marrowforums.org if they are able to write and read in English. Although no regulary mdS organisation exists actually in Vienne, and will only develop in the next years..

I could make the invitation to this meeting privately, or by mentioning AA-MDS International Foundation in the invitation pinned up on the walls of ambulances (we have got four in Vienna, and people come also from lower Austria and Burgenland, MDS mostly elderly people, i guess..

So, who could tell me if this is ok what i do?

Anyway i can organize a very private event also, without mentioning AA MDS International Foundation..

Who can tell me?

Kind regards,

Margarete