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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: International Thalassaemia Conference registration  (Read 66398 times)
Eponine
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« on: February 01, 2008, 05:05:11 PM »

Dear friends,
 
On behalf of the International Thalassaemia Conference Committee 2008 I am pleased to announce the launch of the website.
Please check it out for more information of the conference, registration, sponsorship or if you have any queries.
 
The website is officially launch at: http://www.thalassaemia2008singapore.org
 
Hope to see you in October 2008 at the conference.
 
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priya
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« Reply #1 on: February 01, 2008, 06:28:44 PM »

Thanks Eponine 

Dimple
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Nur
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« Reply #2 on: February 02, 2008, 09:20:54 AM »

Thanks Eponine  for the much awaited news.

Do we have to register to view the details such as Accomodations?

I want to know more about the sponsorship.
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Andy Battaglia
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« Reply #3 on: February 02, 2008, 09:55:13 PM »

Eponine,

The registration form asks for a fax number and will not allow one to proceed without it. Isn't this a bit unusual? Not many people have their own fax #. I am unable to register as a result.
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Andy

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Eponine
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« Reply #4 on: February 03, 2008, 01:25:45 PM »

Andy,

Really? But I completed the registration without the need for a fax. However, I will check this out for you. Will revert to you as soon as I can.

Sorry for the hiccup
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Eponine
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« Reply #5 on: February 03, 2008, 01:28:28 PM »

Hi Nur,

Hee... the sponsorship part you see on the website is for companies looking to sponsor the conference or parts of it. 
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Andy Battaglia
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« Reply #6 on: February 03, 2008, 09:11:21 PM »

Registration fees are quite high to the point of being prohibitive for many people. Why is the dinner so costly? $200 Singapore dollars is over $141 US dollars.  Huh? The most expensive restaurant in town doesn't cost this much. With travel and hotels I estimate it will cost me about $3000 to come. Seems unlikely I will be there. Sorry.
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Andy

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Smurfette
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« Reply #7 on: February 03, 2008, 09:14:11 PM »

 

$200 for a dinner...OMG I have never paid that much for a dinner...Even when the society has a dance on our tickets arent even that much...WOW

Andy I think thats how much its going to cost me to go too...And I am in australia which is closer to singapore...


OH WELL
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Andy Battaglia
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« Reply #8 on: February 03, 2008, 09:54:41 PM »

After the Dubai conference, I am very wary of paying a lot for food since vegetarians are usually a second thought at best when planning a menu, even though there are many vegetarians among the attendees at thal conferences.

Ashish railed at the concept of charging patients registration fees and had planned on coming to Singapore without registering and not attending any talks but being at the conference center, nonetheless. TIF never listened to him but instead sent the Mumbai association a gigantic bill for membership. With Ashish now gone, much of my reason for going has vanished.

I am in a somewhat unique position being neither a patient nor a family member and not a medical professional. However, I have had more than one patient tell me I do more for thals than all of TIF combined. But I have no funding at all and every trip has been paid for out of my own pocket. Sponsorship by an org is unlikely as the patients come first, as they should. In the end, my desire to do what is right (Gandhi said “You must be the change you want to see in the world.” ) has to be tempered by what is financially viable for me. As much as I want to see a world where decisions are based on what should be and what is the right thing to do, regardless of one's own self-interest, I find what I can do is extremely limited by lack of funding. I have considered starting a foundation but time limitations make that unlikely, as between my store and the thal site, I spend over 100 hours working per week. If any lawyer wishes to donate time to help me set up a foundation, please speak up. Don't be shy now. hehe.
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Andy

All we are saying is give thals a chance.
Smurfette
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« Reply #9 on: February 04, 2008, 12:46:47 AM »

Andy

I agree with you.... I have been to a few international conferences and as ashish did for one of the conferences I didnt pay for...but australia is registered with TIF...

But all the patients have to pay a registration fee too...not only the dinner...And I can tell you that the registration fee isnt cheap either...

When I went to Malta I had to pay nearly $500 AUD to register...plus that wasnt cheap...

Plus we paid for the dinner that we all went too....

Well to most of us Andy you have been more than a family member and you have helped some people in ways that doctors cant....

I consider you as part of my family   

And I hope that there is some way that you can attend the conference and I hope that I can attend and meet you in person 


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Eponine
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« Reply #10 on: February 04, 2008, 03:01:46 PM »

Hi Andy, Smurfette

I hear you. The registration fees, although it may seem like a really high price to pay, is actually heavily subsidized. We do not make any profits at all in this price, in fact, we make a lost becuase the cost price per participant is definitely way more than that.
If we could have our way, we would furthur subsidize all parent, patients and supporters. Yes, there is a supporter component in our registration for people like you. In fact, I was thinking about you when I suggested that component becuase there needs to be a submission of medical report from your doctor if you were to register as a patient. I really hope to see you at the conference not because I want to 'earn' your money, but becuase I want to see all of us who are pouring our hearts out here getting together finally and being able to see each other to continue encouraging and spuring each other to carry on in life.

I get what you mean when you talk about TIF. Sometimes I wonder if they have forgotten about their objective of setting up an organisation or have they been blinded by money.

As for the dinner, it is the gala dinner which is optional. You can choose NOT to go for it and it will not affect your education from the conference in anyway. It is priced at so high because of some difficulties. We have hotel at different rates. Will those meet your budget?

Oh BTW Andy, the fax no. requirement has been removed.
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Smurfette
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« Reply #11 on: February 05, 2008, 05:14:43 AM »

Eponine

Well I think that TIF has forgotten about their objectives of setting up a organisation... They have been blinded by the money side of things... As they say money talks and B***** walks... Well its true in many ways...

As for the dinner its the dinner that most patients go to and have a great time...Thats when we can all get together in a relaxed atmosphere and goof around, talk to others and even get to know some others there that they didnt see while they were in the meetings or what ever....

Its still a long way for the conference..I cant make any decisions on attending now...I dont plan anything until the last min...Because when i do plan things from months ahead, they usually dont go according to plan..

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Narendra
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« Reply #12 on: February 05, 2008, 03:50:44 PM »

I am in a somewhat unique position being neither a patient nor a family member and not a medical professional. However, I have had more than one patient tell me I do more for thals than all of TIF combined. But I have no funding at all and every trip has been paid for out of my own pocket. Sponsorship by an org is unlikely as the patients come first, as they should. In the end, my desire to do what is right (Gandhi said “You must be the change you want to see in the world.” ) has to be tempered by what is financially viable for me. As much as I want to see a world where decisions are based on what should be and what is the right thing to do, regardless of one's own self-interest, I find what I can do is extremely limited by lack of funding. I have considered starting a foundation but time limitations make that unlikely, as between my store and the thal site, I spend over 100 hours working per week. If any lawyer wishes to donate time to help me set up a foundation, please speak up. Don't be shy now. hehe.

Andy,

I salute your dedication and I like it more because this is for people most of whom you don't even know, which is really selfless. I think you do so much for other's that I feel like your attendence would benifit others. Your insight helps a lot to those looking for answers plus you think from a patients prospective.

For the financial side, I am ready to chip in with some money for you to go and attend the conference. I think that would be a huge plus for us. Members, what do you guys say? I don't even know, if I should be mentioning this as it goes into financial issues, but this is something I feel we should do for our superhero (Andy). What say folks?
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Bharat
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« Reply #13 on: February 05, 2008, 04:57:38 PM »

Well said Naren,

Andy,

You are a unique individual. We have a beautiful 13 month old baby boy. When my wife, who is Thal Int was expecting, many on this site offered their advice and support. Your support, hard work and love is greatly appreciated. I understand Naren's hestitation to bring up financial issues on this site, but I am prepared to help out in whatever way I can.

Regards
Bharat
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Hope
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« Reply #14 on: February 05, 2008, 07:38:16 PM »

I agree with Narendra...Andy, within a short time, I noticed that you are an wonderful individual, giving all the support to the forum members. I am also wiling to help on your trip to singapore.
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