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Singapore Scientific Programme Schedule
Isis:
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. ) :gaah
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???? 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. :rotfl
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 .....?????
Even if they agree to refund, what about the fortune we spent on travel and stay ???
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.
:dunno
Depressing.
Andy Battaglia:
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!
Smurfette:
WOW!!!!
Andy I can feel your anger right down under :rotfl... 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 )
Manal:
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
Kathy11:
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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