Discussion Forums > General Chatter
The Singapore Conference: Are you more likely to go if Andy is going?
Miaki:
OH I SEE THE LIGHT......Finally I hear others saying what Ashish and I spoke about many many times before.
Yes TIF is all about TIF (the executive body - hmmmm perhaps only 2 members of that executive body :rolleyes) Anyway I have many thoughts which I wont go there because you can't do that on a forum which has eyes of the unwanted.
Andy is a voice for many patients that are not able to attend. I am more than willing to do what it takes to get him there, however we need to approach the drug companies such as Novartis (the biggest one of all) ApoPharma, Ferriscan - didn't we or don't we have one of their reps on our forum? We need to perhaps write to Derek (Singapore society president) and put Andy's case forward see if he can help out in anyway. I am sure they are all going to profit from this conference, so why can't they fork out what it takes to have Andy there for all the patients that wont be able to go, after all his our voice.
In regards to hotel accomodation Andy, if I tell you what happened when we went to Greece and Italy I am sure you wont be pleased. As usual accomodation was too expensive so we patients resorted to finding cheaper accomodation which was across Athens which took you about 1 hour traveling time OR some of us stayed at other neighbouring hotels which where down a steep hill. Patients with heart problems and other health issues had to walk this steep hill morning lunch and night to go back and forth to the conference. Why didn't we take a taxi u say? Well as soon as we called for one they said to us it wasn't feesabile for them to come that far for such a short trip. (work that out lol) ANYWAY in Italy the same thing happened, most of the patients stayed in rooms spread across the resort which was a good walking distance. Meanwhile back in the actual conference TIF members had to simply get dressed and walk down to the lobby area.
YIHAAAAAAAAAAAAAAAA for equality and patient respect NOT :mad
SO come time now for Singapore there is a good handful of patients who can't afford to stay in the same hotel were the conference is being held so we have found our own accomodation, which is only a short walk from the conference centre. If you are thinking of going pleaes private me and i will direct u to the hotel.
We need as many people there as we can possibly get to Singapore. I totally understand it being so expensive, I have done it for the last 4 conferences now and they have always been over the other side of the world for me. I am blessed I am able to go however its nice to have something in my backyard for once. But without failure we all represent one another when we go and I am more than willing to do anything to help Andy get there. I wish all of our family here could go (that would be so crazy lol)
Miaki xx
Andy Battaglia:
Miaki,
Can you give me some guidance with contacting these companies? I don't really know who to contact and I also think it might help if others also contacted these companies to let them know what value I bring their companies by advising on the various treatments. Ferriscan has definitely done more business because of this group but the rep I knew previously and who I made a point of sitting down with at the Dubai conference, is no longer with the company. I do feel that in terms of the financial self interest of these various companies, that the help I give patients and parents in understanding the different tests and treatments and tips on tolerating the drugs, it is worthwhile to these companies having me help so many people. Providing me with the opportunity to attend the conference and continue to learn and afterwards apply the knowledge, can help these companies in the long run. They do not have the ear of the patients, the way I do and a symbiotic relationship can be of great benefit here. I hope we can make these companies understand that and contribute to my attendance in Singapore. I do take the conferences very seriously and am willing to bet that I attended more medical lectures than most of the doctors who were present in Dubai. I for one, cannot wait to hear the reports on the various trials that are beginning this year. I hope I can get the chance to do so.
We all wish TIF was a more effective organization and I would like to see much more contact between TIF and patients, but it isn't happening. At the very least, they should be directing people to where they can find proper care in their countries. I do feel that the Cooley's Anemia Foundation in the US is a more effective organization and commend them for having an active patient services coordinator who does help people find proper care. They also have a regularly updated site (thank you, Craig Butler) that keeps up on current events. TIF seldom updates their site, which is frustrating. The international organization should be one that patients can turn to for direction and that is not the situation. Maybe we need to demand more.
§ãJ¡Ð ساجد:
Hi,
Is there any way CAF can help you get to Singapore? Do we have a member here from CAF?
Smurfette:
Miaki,
Are you definately going to singapore... if you are let me know...and if you want to share accomodation?
I want to go, but if I go and get a room of my own its expensive if you do share accomodation it works out much cheaper...
Let me know please
Smurf
Miaki:
Smurfette - Yes i am definately going to Singapore (providing all is well at the time with my family) I will keep you posted and notify you of any updates from the Australian contingent attending.
Andy - I am speaking with Novartis tomorrow so I hope to get some answers for u. In relation to FerriScan i know the gentleman u are referring too and yes he has left the organisation now. There were some difficulties within the business structure, however I have at the level of ownership, i will call them also tomorrow and chase things up for us (you)
CAF is great, I think Craig Butler does a wonderful job and he should be congratulated.
TIF ....dont get me started Andy ...lol Anyway I will keep you posted but hassel me if i dont deliver please as u know i am forgetful sometimes, but i have been good lately
Miaki xx
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