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Author Topic: 2. PanEuropean conference  (Read 26892 times)
Ironman
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« Reply #30 on: March 15, 2010, 05:30:04 PM »

I think all the doctors forgot that they were talking to patients. It was way to technical, and I am glad that I had my doctor to clarify any questions, otherwise I would have been lost after 15 minutes...
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Andy Battaglia
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« Reply #31 on: March 15, 2010, 07:11:38 PM »

This is one more reason people like to see me at conferences. I do understand the lectures and can break it down in normal language for others to understand. In fact, I seldom attend the patient side of the conference. My only problem with the medical lectures is that my brain screams for a break after some hours.
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Andy

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Ironman
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« Reply #32 on: March 16, 2010, 05:30:12 AM »

Good informations agreed, but if you were a patient attending for the first time, hoping to meet new people and/or learn something new, it is impossible to sit through 7-8 hours of medical mumbo-jumbo.

That should be a concern at every conference aimed at patients, I think.
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Dori
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« Reply #33 on: March 16, 2010, 06:50:46 AM »

Iroonman, I couldn't find you! I asked a question and was wearing tradtional Dutch clothes at the gala. Did you notice me?? From dekegation were you are were you alone?
I wait for your excuse;) or did we actuslly meet? :s
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Ironman
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« Reply #34 on: March 16, 2010, 07:09:56 AM »

I couldnt wear a nametag signed Ironman for obvious reasons hehe...

I was with the danish delegate(the one with a girl wearing a scarf). We didnt attend the galla as our group did not sing or dance(we are not ethnic danes!) So they didnt want to be in the spotlight and decided to go out and eat, and I followed along.

I think we were in the same elevator sunday morning, but been awake that early I forgot why the name "Dore" sounded familiar hehe...
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Andy Battaglia
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« Reply #35 on: March 16, 2010, 07:53:28 PM »

The conferences that TIF runs every few years do have separate patient and parent sessions in addition to the medical sessions. These presentations are done so that the topics are easily understood. Many even feature some of the same doctors, but with a talk directed at those not in the medical field. These sessions go on at the same time as the medical presentations, so often I have to choose between the two. I usually end up being one of the few laymen in the medical sessions. At the Singapore conference, most patients and parents were not allowed into the medical sessions, which really was a terrible decision by their government. I will note that at the recent conference in NYC, patients, parents and interested parties were specifically invited to attend the medical presentations. I believe this is how it always should be and I will not attend another conference that prevents regular people from attending medical presentations. There is no valid explanation or reason for depriving people of information about their health.
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Dori
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« Reply #36 on: March 17, 2010, 01:59:39 AM »

Ahhh I remember THE elevator! When I grabbed the mic I was almost going to ask of the Danish delegate was there. Do you think we were all etnical dutchies? The food was horrible btw - but you missed my performance Will upload Lucs later. Must run through the house now.
Cu in Antalya in 2011 ;)
hmmm i didn't press post yet. I stood by the girl when she was in conversation and tried to read her card. Weird! (there were only two with a scarf, yes?)
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Lena
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« Reply #37 on: March 17, 2010, 11:56:53 AM »

Was there anything  interesting going on in the PanEuropean conference? Any medical announcements that we should be aware of?

Lena.
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Canadian_Family
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« Reply #38 on: March 17, 2010, 02:03:48 PM »

Lena,

You are always to the point, I like this quality.

Cheers.
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Ironman
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« Reply #39 on: March 17, 2010, 04:13:07 PM »

Was there anything  interesting going on in the PanEuropean conference? Any medical announcements that we should be aware of?

Lena.

Well I dont know whats interesting, and which announcements that you already know of.

What I found interesting personally, is about Gene therapy.
According to one of the speakers(can't remember who), the clinical trials for thal, will begin in 2012.

Sounds like good news to me!
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Ironman
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« Reply #40 on: June 08, 2010, 07:36:02 PM »

Presentations and workshops out now:

http://www.thalassaemia.org.cy/conference_presentations.html
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Dori
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« Reply #41 on: June 13, 2010, 09:41:32 AM »

Gabri, in case you read this could you please contact me?
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Bappy
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« Reply #42 on: June 13, 2010, 12:08:56 PM »

hello there,

Is there any decision taken for patient.
             
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I am a thalassamia E-beta patient and I am a M.B.S student
manit
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« Reply #43 on: June 26, 2010, 11:24:08 PM »

Hey can u all lemme know how do u come to know about the conferences being held is there a awebsite thru whch u come to know or what pls lemme also know about the same so that even i can check it regularly
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Andy Battaglia
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« Reply #44 on: June 27, 2010, 12:41:15 PM »

We do try to keep people informed of upcoming conferences, but also check CAF, http://www.cooleysanemia.org and TIF, http://www.thalassaemia.org.cy/ for updates. The most current announcement is in our thread at
http://www.thalassemiapatientsandfriends.com/index.php?topic=3554.msg36224#msg36224  Full details can be seen at
http://tif2011.org/eng/registration.htm
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Andy

All we are saying is give thals a chance.
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