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International Thalassaemia Conference registration

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Miaki:
wooohoooo thats exciting news.

Yes the lunches are a great way of meeting and bonding with people.

Miaki

Eponine:
Hi guys

Sorry I've been away for so long.
Yes lunch is definitely provided for.
BTW just to inform you guys, the parents patients program this year is planned for for all 4 days instead of the 1.5 days that was held in Dubai. So we will have more time to sit around and whine to each other...  :rotfl

Sylvia:
Hello all

I have also received confirmation from the organiser that Dr Tim St Pierre has been accorded a presentation slot at the parents and patients session. I will post more details on the date/day of the presentation once more info is provided.

Smita Shah Shetty:
Hello!!!

The Singapore conference registration and gala dinner fees are definately not easily affordable even for those from the medical profession.


There are many like myself, who are interested in Thalassaemia, but are not related to any clients directly. Having worked in Prenatal Diagnosis for Thalassaemia as a counsellor and technical person, can neither qualify as Nurse, etc catergory, nor as parent.

In the past having attended the Malta, London and Dubai conferences would very much like to attend the Singapore Conference. Presently am not in paid employment but just doing voluntary work so registration as Delegate is unaffordable. Would like to register as Supporter, (even this is not really affordable) but:
The registration for supporter asks for the following:
"For verification, supporter is required to submit a copy of the medical records of their charge with the completed registration form to the Conference Secretariat."

Can the Conference Secretariat consider regisration as Supporter for people interested in Thalassaemia?

Registration as Patient/Parent/Supporter includes:
"Admission to all sessions in the 13th International TIF Conference for Thalassaemia Patients & Parents 2008 (excluding the 11th International Conference on Thalassaemia & Haemoglobinopathies and the Pre-Conference Workshops) and trade exhibition."

In the past conferences one was free to attend the Scientific Conference as well as the Patients & Parents Conference freely, then why this restriction at this conference. Please correct me if am wrong. Could the Organisers throw some light in this regards please?

Hope all those wishing to attend the Conference will somehow be able to attend the same.

Smita

Andy Battaglia:
I too, am distressed at the costs involved for this conference. I am a volunteer, yet would still have to pay a much higher registration fee than I did at Dubai. I did talk to Eponine and found that the medical records requirement has been dropped..

As high as the fees are for this conference, that is only a drop in the bucket for me. Airfare from the US and the extremely high cost of hotel rooms make it nearly impossible for me to even consider going. Yet, somehow, thal associations manage to put people up in 4 star hotels. I am told on Facebook that this is not a gathering of the elite, but it really does seem that unless you're an insider at one of the associations, you can forget about going. I do not get any sponsorship but still get some flak from people because this group is now accepting donations. These small donations have been used to pay website fees and finance the mailing of needles to patients all around the world, yet somehow, this creates resentment in some of the association people, who seem to want every nickle for themselves so they can live it up it grand style at conferences. If they, in good conscience can justify fancy hotels as a priority over helping their fellow thals, then I am missing something.

I seriously doubt I will be at Singapore, even though it does mean so much to me to hear the medical presentations and meet patients and their families. However, since so many people won't be going, the latter becomes nearly irrelevant. I will continue to do my best by sitting in front of a computer screen and offering help, packaging up needles (I am running out, so that will also cease soon), and mailing them. If I get anymore donations, they will most likely be used to purchase needles to send to patients. The costs of going to Singapore are so high that it is not realistic to think even 10% of the cost can be covered by gifts to this group.

It appears the International Thalassemia conferences are on their last legs and I seriously doubt we will ever again see a conference on the scale of the Dubai conference. Registration for Singapore is way down from Dubai and the costs of international travel will make it extremely hard for people to go anywhere. It is a shame, but the manipulation of the dollar and oil prices by the powers that be are leaving us with a world too expensive to live in, and this of course, is far outside the realm of any organizations and associations.

I do also wish more people would be able to afford this conference, but without some massive influx of sponsorship funds, this does not seem likely.

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