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Singapore Scientific Programme Schedule
Narendra:
Andy,
I absolutely agree with you. It is surprising that they (Singapore Conference Organizers) were NOT upfront and did not mention earlier that the medical conferences are only for doctor's. I am very surprised and can see why you are mad on them. For knowing the common things about Thalassemia - we have to meet at a global level !! - which lot of us know in our dreams now
What we need to hear - What are the advances done, What are the possible new cures coming up and the new medical advancements - which most likely will be discussed in the medical conferences
Andy --> While, I can understand your dismay - I would say - Try to see the positives of what you are going to get. You going to meet a lot of buddies you wanted to see. You get to take a break from your daily life (I know - that is all at the expense of your time/money/energy and lot of scheduling you might have to go around). But, Andy - Let's look at the positive side of it for now.
Have a nice time and do let us know if you need anything, while you are there.
Manal:
That is frustrating and wste of a lot of money and time. my life is up side down and my children are moving to another house for what????? All important lectures are in room one, nothing important at all in room 2
Andy , Puja, Eponine.. when i received the invoice of registration it stated clearly that parents have the right to attend all scientific sessions in room 1 and 2 except the workshops as found below.
--- Quote ---Patient / Parent / Supporter
Name badge, conference bag, programme cum abstract book.
Admission to all scientific sessions at the 11th International Conference on Thalassaemia & Haemoglobinopathies and the 13th International TIF Conference for Thalassaemia Patients & Parents (excluding the Pre-Conference Workshops) and trade exhibition.
Invitation to opening ceremony.
One lunch and two tea breaks per full-day conference.
Certificate of Attendance.
--- End quote ---
manal
Andy Battaglia:
Manal,
You were the first person I thought of when I heard about this. I know how seriously we both take these scientific presentations and how much this will diminish the value of this conference for us. I think we should all have our registration receipts printed out to show at the door when they refuse admission. We should all also demand refunds. And we should also demand and end to TIF as the body that represents thalassemics internationally.
Narendra, seeing everyone is really great but it does not justify the time, expense or upset to our lives that this long distance travel causes. The organizers and TIF need to be held accountable for this unbelievable act of deception.
This must be the last conference location that is chosen because of reasons like the shopping is good and some org big shot gets to visit family! The conferences have to be returned to the people that they are supposedly held for or this site will never again promote or recommend another TIF conference. TIF has long forgotten the average thal and has become an organization full of people who want something for themselves.
Manal:
Thanks Andy for your constant concern :hugfriend
I will print all the invoices even the hotel booking, who knows :dunno ???
i will let you know if i receive anything
manal
Maako:
I too have emailed the addresses you gave me andy, and wrote on the facebook wall of the thalassemia conference group all of my frustrations.. No reply yet... Already disappointed before it started....
Manal, i remember reading it too in the invoice... i already have it printed as well.. We should all meet at the registration and try whatever we can..
i was so frustrated that i even called my work organisation back home today, asking for ideas.. since i worked there before as a lab. tech trainee in a thalassemia screening lab, had the idea of printing cards in my name as such or getting some letter from Society for Health Education, stating that I am both thal patient and technical.. but i doubt that it would work since im already registered under the conference as a patient...
Like i said on the facebook wall, i, for one certainly dont want to sit and listen to what is thalassemia and why do we need blood transfusions while molecular and gene therapy presentations are being held in room 2.
I am trying to look at the positive side of this, such as meeting u all... and thinking that topics such as growth, development, puberty, cardiac would be worthwile.. but what after that??? i do so want to listen to gene therapy, molecular therapy, pre implantation genetic diagnosis, topics under prevention and iron chelation and all the topics under the main day three 10th october (all about fertility and pregnancy i was soooooooo loooking forward to :wah)... i still cant beleive i will be missing ALL that :mad...
like Andy said, for me, it is not worth juggling around my classes and assignments (and my final submissions start in not more than three weeks after the conference)...
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