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55477 Posts in 5941 Topics by 6281 Members
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Author Topic: Singapore Scientific Programme Schedule  (Read 107271 times)
Isis
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« Reply #15 on: October 03, 2008, 07:11:17 PM »

Thals and their parents have to know more than doctors almost all their lives. Doctors have learned a thing or two about a thing or two from us adult thals. Thals cannot be kept in the dark about their own health issues !!
What rule would ask us not to be involved in our 'lifelong' treatment ?? We are supposed to know the latest in keeping ourselves alive, this knowledge is not available in all countries and for anyone to deprive us of that knowledge for which we had to pay, is akin to mockery. Keeping us away from info that we paid a fortune to attend and people back home waiting to hear about this info ? 
 
That is unbelievable. How can they at this late stage just change terms like that after they have made us pay a good amount in reg. fees.  Not to mention that we travel all the way and at a great expense to self. (not everyone has been sponsored - some of whom go just for fun and have little interest in attending the conference scientific or elementary sessions. )   

We would consider it highly unprofessional if they actually backed out on terms they have promised when collecting high fees. Esp. when people have spent a fortune to get to Singapore conference for what?Huh?  Not to attend some elementary stuff we adult thals could actually hold talks upon  ourselves (and I already do, while counseling the younger thals and their parents). They should have told us this at the start and then have to pay us to attend. 

The older thals are bound to feel suckered if the ADULT thals are not allowed to sit in on sessions which they are totally suited to attend to know about their treatments and advances.  It would be a travesty to hold a conference for patients that does not allow the patients themselves to attend.

At this point I hope there has  been some misunderstanding. Also, all who had registered were allowed to attend scientific sessions in Dubai.

Do the organizers realize we have paid to hear about advances and new medical research. The talks that would help the adult thals and also to disburse information back in our own local societies and that is the one they plan to keep us out of .....Huh???

Even if they agree to refund, what about the fortune we spent on travel and stay Huh?
 
Why did they not just hold a conference for doctors then!!!
On a positive note, a lot of the talks in the room2 would  be good for the parents of the younger thals and thal infants.  However , it is very frustrating for the older thals and we cannot even back out at the late stage that they spring this news.
 
 
 
Depressing.
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Andy Battaglia
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« Reply #16 on: October 03, 2008, 07:13:59 PM »

Why does Singapore have such restrictive laws about regular people having access to medical information?

Let's go back to Bill C-51 in Canada that we discussed previously. There is a massive worldwide attempt by the pharma industry to take all control over their own health away from people. Singapore was easy to conquer because it is well known as one of the most restrictive societies on earth. Any law that controls people is gleefully adopted there. We must guard against similar attempts in each of our own countries. These supposed regulatory moves by government that will deprive you of the most basic information and even natural supplements and treatments, need to be defeated everywhere.

And meanwhile, we are stuck obligated going to a conference that has very little value, in a country where chewing gum is a punishable offense. Thanks TIF. Thanks Singapore thal society. You got us good this time but never again!
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Andy

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Smurfette
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Me and my Goddaughter


« Reply #17 on: October 03, 2008, 10:39:23 PM »

WOW!!!!

Andy I can feel your anger right down under  ... What a joke.. I have been to 2 conferences and never have we been told that we arent allowed in the scientific part... I am sure that the other conferences were the same..

I feel for all who have paid that much amount of money and wont be able to attend for what they paid for...

This sucks ( sorry )
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Manal
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« Reply #18 on: October 03, 2008, 10:41:02 PM »

So does this mean there is no way at all to attend?? If i have a chance to cancel the trip shall i do so or we may be able by the invoices we have to attend the lectures?/


Andy please advice

manal
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Kathy11
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« Reply #19 on: October 03, 2008, 11:34:35 PM »

hi to everyone,
regarding this topic.
I think it's a shame for thal patients whom I think knows more about thier illness  than those pen pushers, has to spend so much money to go to singapore and to find out that things has not changed the so called sciensist blabe  as always, but is not prepare to listen.

Andy I would boycott, just out of principal.

They always seems to think the are so intelligent that they are in a league of there own  how insensitive treating others like idiots.or  maybe some others, trying to get rich quick from the vulnerables  " what a shame"

I don't Apologize,  thats what I think. I am not sorry if some don't like my thoughts just dont read it.
Kathy
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aysam
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« Reply #20 on: October 03, 2008, 11:57:40 PM »

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  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  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  but then i might need bail money to get me out of jail lol anyone have any ideas Huh?Huh?Huh?Huh?Huh?Huh?Huh?
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, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
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Andy Battaglia
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« Reply #21 on: October 04, 2008, 02:26:44 AM »

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.
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Andy

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Manal
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« Reply #22 on: October 04, 2008, 03:28:35 AM »

Okay Andy, then i will be there and we will all make a big noise togather

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?Huh?

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
 
 
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Andy Battaglia
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« Reply #23 on: October 04, 2008, 03:54:53 AM »

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.
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Andy

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Manal
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« Reply #24 on: October 04, 2008, 03:59:09 AM »

Andy PM an email where i can forward you the email that i have received

manal
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Andy Battaglia
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« Reply #25 on: October 04, 2008, 04:01:18 AM »

Anyone can always reach me at andy@thalpal.com
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Andy

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Sharmin
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« Reply #26 on: October 04, 2008, 04:08:09 AM »

My experience is that going through the red tape to meet a doctor is usually more difficult than actually creating a rapport with the doctor.  Doctors are interested in patients, and they are very likely to have discussions with you and give you useful information. 

I am amazed at how much doctors have helped me when I have reached out to them directly.  It is the rif raf that surrounds doctors that makes it impossible to get information from them. 

Good luck guys,  you will all learn a lot and make great connections. 

Andy, the kind of organization you speak of that helps people - I think that we have that kind of a community right here:) 

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Sharmin
Manal
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« Reply #27 on: October 04, 2008, 04:17:04 AM »

Quote
Andy, the kind of organization you speak of that helps people - I think that we have that kind of a community right here:) 


Maybe this is not time for discussing this but we seriously should put our group in a some sort of a formal way in order to have easy access to such events and to be formaly addressed by other.

Andy when we are back from Singapore, we need to discuss how could this happen ? what do we need?? We need that those organizers address you in a formal way as our representitive

manal
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Maako
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« Reply #28 on: October 04, 2008, 06:24:19 AM »

I recieved an invitation letter as well, to the opening ceromony
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Maako
aysam
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« Reply #29 on: October 04, 2008, 08:42:53 AM »

thanku andy i will be looking out for u and i will be one of the nosiy ppl
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, MY LITTLE MAN ,
I MEET A BOY EVER SO SWEET THERE HE TOOK MY HEART FROM NOW HE WANTS TO SET IT FREE
       I WENT HOME TO CRY ON MY BED MY FATHER CAME IN TO FIND ME DEAD
HE FOUND A LETTER IT SAID
 (DIG MY GRAVE DIG IT DEEP ON THE STONE UP ABOVE TELL THE WORLD I DIED FOR LOVE )
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