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Singapore Scientific Programme Schedule

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Andy Battaglia:
Hi Puja,

Keep in mind that the scientific programs are sometimes quite hard to follow for long periods as they are quite technical, so you may want to plan to spend more time in the patient and parent programs, which tend to deal with the issues that patients and parents face, rather than the direction new research is directed. I do go to quite a few of the scientific presentations also, but find I have my limits as my brain goes numb after absorbing so much information. I think the best approach is to make some priorities of what you want to hear the most and make a point of attending those first. Be flexible and don't feel bound to sit through something if you fond yourself losing interest in a particular presentation. Take a break and check out what else is going on or just mingle with others who are hanging out in the common areas. There may be time when people split up to cover the different things going on and hopefully we can get fairly good coverage of most of the events by doing that.

I have not heard from anyone involved in the conference recently and have avoided contacting them as I assume at this point, the preparations are keeping them very busy. You may want to contact her with any questions you have.

poo gill:
Hi Andy

Sorry to confuse you guys!.


 However I clarified with Kymn(Eponine), Parents will be allowed only for Room 2 presentations, cos HSG(Health Authority of S'pore) restricts the room one presentations only for Doctors. I asked Kymn wether you wil allowed, so she was not sure about that as you are signed up as  supporter and not a Doctor. i think from all of us only Dr marwaha will be allowed to attend and the transcripts and stuff only he might have an access to it. As for us we might not have an access to anything, I was wondering how will we share it with the rest of our group.

What we can do is may be we can meet the specfic Doctors later and ask them, stuff.

I am in touch with S'pore people, let me know if u need anything to be done.



 

Andy Battaglia:
If we are not allowed to attend the medical presentations, the conference will have a greatly reduced value and for myself, almost NO value, resulting in a huge waste of time and money for me and most others. If this is the case, the organizers had a responsibility to inform us of this long ago and not after it is too late to change our plans.

I am completely disgusted. It is a 26 hour trip for me each way and the trip is costing me thousands of dollars and for what? Can anyone from Singapore answer what is the point of the conference if I am supposed to attend What is Thalassaemia and Why Do Patients Need Blood Transfusions, rather than Molecular Therapeutics and Alternative Therapies for Thalassaemia??? This is utterly ridiculous and if the explanation is the government doesn't allow this, then TIF had absolutely NO business allowing Singapore to hold this conference!

poo gill:
Hi Andy

I spoke to Kymn and Derrick at length. Has Derrick replied to yourmail. I told him people are flying in from USA,Egypt, India and all over the place basically. Also that we are very much aware of the basics and our interest is the more technical stuff which is critical for us. They said even they have argued and it is the against the law. The sad part is we would have been told this on the registeration stage and I just happened to call Kymn when I was thinking who wil attend what to cover all the topics, so that we donot miss out anything.  They should have indicated it clearly on the website.

According to Derrick we wil be allowed to attend the Room 1 in which Room 2 has been indicated as grey boxes. Even after talking to them the conclusion is it is agaisnt the law, we cannot attend the important presentations like molecular research etc.

Wonder what we will do, second day looks as only parents interactives session.

 

Andy Battaglia:
Hi Puja,

No one from the Singapore organizers even had the courtesy to respond to my emails, my post here, or on Facebook. They have rendered this conference a sad, expensive joke on the attendees and they knew exactly what they were doing. The ONLY thing that has mattered the entire time for TIF, UKTS and the Singapore thal society, was holding the conference in Singapore. We have been intentionally misled by a small group whose agenda has absolutely nothing to do with providing a worthwhile experience to the many patients and parents who have spent huge amounts of money and are taking the time off from work or school and their lives to attend what they think is a medical conference. Instead we will be treated with topics with names like What is Thalassaemia?  Hmmm...didn't someone here write an article with that very name so that people who knew very little about thal could be introduced to what is involved in thal and its treatments? Do I really need to fly across the world at great expense to hear a presentation on that???

I am completely disgusted and now I have to convince myself to still get on that plane early tomorrow morning to begin a 26 hour trek to Singapore so I can learn what thalassemia is and why thals need blood transfusions. I am sick about this. For those thinking we will all come back with mountains of new information, please don't expect much, if anything.

Several of us have been joking about getting arrested in Singapore because it is known for being a very restrictive country. Who would have thought the reason we'd be arrested would be for attending the conference itself?

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