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Singapore Scientific Programme Schedule
poo gill:
Dont worry guys'
Andy , manal are already on their way.
I am here, will try to see how best we can manage.
We can talk to the doctors indiviually if all the other resorts fail. Lets hope for the best.
Aysam - this is Puja here u can call me once u land in S'pore. I am sending you a personal message with my contact details.
Eponine:
When the scientific sessions were planned for, parents and patients could attend ALL sessions as like in previous conferences. It was only later when we checked with our Health Science Authority, the regulations are that only medically trained people could enter the medical sessions. The rationale for this ruling is because these people are medically trained and would have the medical knowledge to make an informed decision.
After this regulation was made known to us, we had to change the program and invoices. As a result, those who had registered before the change had invoices that mentioned that they are entitled to enter all scientific sessions. However, knowing that banning parents and patients from the medical segment will incur a lot of wrath (like now) we have persuaded our scientific committee to agree to open certain sessions that we think will benefit the parents, patients and supports. Plenary 3, 6, Symposium 6, 7, 12, 13, 14 are open for all participants. So we are trying our best to pacify everyone here.
All these while, because these thal conferences are held so far away, people in asia have no opportunity to attend the conferences. Now that the conference is in asia after so long, we are obligated to tend to the needs of the people here and that is the objective of the conference. Andy, Isis, Asyam, Manal and the rest of you in this forum have the privilege of having easy access to the education of thalassaemia. You were privileged to be able to attend conferences on thalassaemia. Do you know that there are some parts in Asia where people cant even get blood? They don't even know the basic knowledge of what thalassaemia is all about! They are wondering why their children are dying slowly! They don't give a damn about molecular whatever and gene whatever! They want to stop their loved ones from dying and they want to know how!
We are not out to cheat you, we are not out to get you! For every parent and patient and supporter that signs up, we have to PAY to subsidise for your cost. That's not cheating! How do we cheat if we are making a loss? As an organiser and a patient myself, whenever I make a decision, I ask myself if this was the best for the participants so much so that I get into arguments with my co-organisers. This conference if not for the parents and patients, then what is it for?? But rules are rules. I'm not saying that I'm happy with it, but what can you do? Rules are there for a reason - to protect the people. This particular rule of not allowing lay people into medical sessions is applicable in many other countries as well like Europe and USA. In Singapore, there have been many incidences and accidents recently involving medications and lay people not making an informed choice therefore, these rules are enforced and reinforced. Singapore is what it is today because of the government. It just doesn’t do anyone any good to break the rules.
In a matter of about 20 years Singapore has gone from a developing country to a developed country. This is no mean feat and we have our government to thank and being"one of the most restrictive societies on earth". It may seem ridiculous to you - the banning of chewing gum. But Singapore is known for its cleanliness and greenness. We would not have reached that stage if not for chewing gum. What benefits of any kind are there to chewing gum anyway? It's not like chewing gum will caused you to be healthier or improve the economy. Singapore is has been voted one of the safest cities to live in. I can walk along the streets late at night or wee hours in the morning without my parents nor me worrying about a being mugged, raped, having a drug peddler coming up to me or being shot in the head or getting blown up for no reason. How and why do you think we come to that? Yes, by " being a very restrictive country". In my opinion, it is such narrow mindedness to judge a country like the way you are doing before you even stepped foot into it. You are condemning a place in which you have never been to and are about to enter.
But comeon' I've attended thal conferences too. Seriously, the point of attending such a conference is not exactly really to gain more knowledge especially since most of us are already quite knowledgeable in this area. It is the contacts and friends that we know that makes this conference. What the hell are we going to do with knowledge of molecular therapies, heterogeneity and pre implantation diagnosis - if we even understand what is going on. To be fair Andy, even you said that there is only so much you can take.
I have been working my ass off for this conference. Juggling with my transfusions, chelation, my professional work and taking on this conference which basically is another full time job. I have been working round the clock for the past few months sleeping on the average of 5 hours and not having proper meals. The last few days for me was just conference, conference, conference from the time I wake up till the time I fall asleep. Friends see me and tell me that I'm crazy doing all this for nothing. I have to constantly remind myself that I'm doing this for the greater good of thal and the people that will benefit from it so it came to me as a shock when I read of such slanderous things written about it. I take personal offence when such things are said about the "organisers" because there is basically only 2 of us!! Only in the past couple months, 3 of us running the conference. Yes, 3 people with their own full time jobs, running a conference for more than 1000 delegates. When you wrote to me Andy and Manal, it was in the heat of preparing for the conference. Like it or not, the conference had to go on and I'm sorry, those were more urgent stuff that I had to tend to. Also, I needed time to find out what was going on and to find a solution before I could adequately reply to you and that is why I could not respond immediately. Would you rather me respond "I don't know and am to busy to bother about this right now"?
I've been trying to accommodate to everyone's request. Andy you remind me to cater for vegetarians cos you are one and I took pains to ensure that there are vegetarian food! I know we can’t please everyone and am prepared for complaints, but nothing can prepare me for "boycott"? " trying to get rich quick from the vulnerables"? "deception"? "Scam"? " getting arrested"? I'm beginning to think that I am one that is all said. It is very disappointing that there are so much speculations without facts.
My question is, why condemn a conference before you even had a chance to experience it for yourself?
Kathy11:
--- Quote from: Manal on October 04, 2008, 03:28:35 AM ---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
Sharmin What about this posting what is the difference between my jokes and this one.
If you are going to be picky and started to tell me what and what not to post,
I shall stop posting.
Kathy
--- End quote ---
Kathy11:
To eponine.
I don't know who you are and I don't care much.
Free speech is my democratic right I am entittled to say what I feel .it might not be what you want to hear/
I listen or read a lot of shit from others,and i deal with it or accept because I respect the other human being point of view, because I know that the other person has the same right as me.
I'm an adult and I don't put up with your shit or anybody for that matter.
Kathy
Kathy11:
IF this forum is going to be the harper Valley Payton Place I'm Out of here.
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