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Singapore Scientific Programme Schedule
aysam:
somene explaine anything to me i have taken four kids to stay at my mums and i am takeing one with me to this this trip
this has cost me so much i have been saveing from the time i heard about it why would i go to singapore the purpose was for the cure and options and advanced medical were we have the right to decide
i have paid admin fee but i was going to pay when getting there for the other i was so excitted for information on other options for my son
why are we kept in the dark
i cant get a return for my money what shall i do why am i going just to learn why my son needs blood this is unfair really no we must demand to go there why they never said all this from the start at least many of us wouldnt go just to know why thals need blood this so sad u know i dont care for the money i have spent i care i that i am leaving my son behind to go shoping in singapore were i would have taken him to a holiday instead i am there for 8 days why ? no flight back
i have paid for 8 day hotel to do what ? i think we should all stick toghter and demand our rights :mad :mad :mad i am so angry i was so excitted trully what do i explaine to my famaliy (oh i went to singapore to tell you guys what may happen in your life and why we need to put blood ) come on THIS IS A JOKE :huh what shall we do we can just say nothing and do nothing well i am not i want to go in and listen thsi si why i am travelling even if i have to sneak in :rotfl but then i might need bail money to get me out of jail lol anyone have any ideas ????????????????????? :wink
Andy Battaglia:
Asyam, I will be there and I will help you meet the doctors you want to meet. You have seen my picture so just look for my bald head. I am most approachable, so don't worry about being shy. Regardless of what the government there thinks, many of the doctors do and will talk to you outside the halls. We will find these doctors.
Manal, I cannot tell you if you should go but there are many opportunities for making contacts and networking. I think with your position in your organization that you have a chance of making contacts of doctors who may come to your next conference and this alone may be worth it to you.
Everyone else, thank you so much for your support. This is a terrible thing that is being done to the conference attendees and will be the first conference to exclude the VERY patients it purports to care so much about. Think of this irony. This conference does not exist except for you but you are not allowed to hear the very information that can help save your lives! This is shameful. I could care less about the petty false democracy called Singapore, but I do care about all of you and I will do my best to find something worthwhile in this conference.
Those who do go, we need to make some noise and show our displeasure with the conference organizers and this scam that they have pulled off. As far as I am concerned, the board of TIF should be immediately dissolved for allowing this to happen. TIF stopped representing patients long ago and it's time we let TIF slide into the past. Ashish Vazirani had planned to go to Singapore with a framework in place for a new organization that would actually represent thals but he is no more. Thals need better than what TIF supplies and definitely deserve better than this organization based on partying and shopping.
Manal:
Okay Andy, then i will be there and we will all make a big noise togather :bat :bat :bat
By the way, i received an invitation to the opening cermony, did any of you get it? thought that attending the opening is the default since we registered so why we need invitations, isn't it????
Ironically, it said that the conference main theme is ''equal access to quality medical care to all thal patients'' ... shouldn't we have first equal acess to lectures!!!!!!!!!!!!!!!!!
manal
Andy Battaglia:
I did not receive any invitation to the opening ceremony. When is it?
We will have to make an effort to get doctors to talk outside the conference rooms. Some doctors like Dr Piga are very accessible. Others are harder to corner but they can be, especially if you are aggressive. I would say that as a team, Shilpa and I managed to talk to every single doctor we wanted to at Dubai. If you are aggressive in your approach you will get more out of the conference.
And the wisdom of Ashish will always be remembered by me. He said if you want to meet people, just say hi and introduce yourself. Tell people where you're from and ask the same of them. You may talk for 30 seconds with some and make lasting friends with others. I hope to introduce many people to each other. Lunches are also a nice place to meet. The people you meet and the contacts you make may prove more important than the content, especially since some of the talks we get to see are so basic.
I also hope that many of you will voice your complaints to both the organizers and the doctors. I doubt many doctors would agree to in advance to patients and parents being excluded from their presentations. Quite frankly, this is not what TIF needed. This conference has lagged greatly in registrations and TIF seems to have very little influence with patients anymore. Perhaps the arrogance of TIF has finally rendered them obsolete. We need an organization that is about thals and helping them wherever they live.
Manal:
Andy PM an email where i can forward you the email that i have received
manal
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