The Singapore Conference: Are you more likely to go if Andy is going?

I just posted this on Facebook in response to "are you going to Singapore?" I would appreciate the comments of those who would like to attend but cannot even dream of it financially.


What about equal access for patients to conferences or is that only for the org people? This conference has priced far too many patients out of going. It seems to be that unless you are sponsored that you can forget about going. I have talked to many patients who would love to go but the price is so far out of reach that it's not even in the realm of possibility. According to the registration requirements I can't go anyway because I have no patient whose documents I can produce.
Quite frankly this whole thing seems to be set up so that the org people can have a very nice time. So little is being done to allow regular patients the opportunity to attend. Please let me know when there is a conference intended for everyone. I really do not get the impression that this conference is  intended for the regular folk. A successful conference would be one designed so that the maximum amount of patients could attend, as was the first conference I attended in Pune, India. This does not even appear to be a consideration for this conference. The dinner price is a total insult and reveals an elitist attitude among the organizers. Frankly, they should be ashamed at the price. I have never spent that much taking a family of 7 out to dinner, let alone for one person! Obviously, regular patients and their families are not expected at this dinner. Ashish was right. TIF is an org that needs to be replaced.
I realize my comments won't make me any friends among the org elite, but I have always been about the patients and not the orgs.
Have a lovely time.

Andy  (please take a seat before reading this post and then perhaps have an oxygen tank near you incase of emergency. After reading this please note that I have not lost it but I'm trying to keep it together)

I would suggest we contact TIF to sponsor you  (sorry i am laughing but......) ANYWAY...... Yes i suggest we ALL pleed with TIF to sponsor you to attend as webmaster of the forum because TIF is all about THE PATIENTS ( somebody bring me some water please)

After all Mr Englezos has been elected as a Board Member of the prestigious European Patients’ Forum (EPF), a highly influential umbrella group of pan-European patient groups active in the field of public health and health advocacy. SO IF WE START EXPRESSING MORE OF WHAT WE WANT we would hope he would listen. Also just as Mr Englezos, ANDY YOU are just as important and vocal for all the patients on this forum and beyond.

Miaki

For some perspective on what patients think, when the Hong Kong thals needed advice on a letter to the Health Authority, they came to me, not TIF. When parents needed someone to write a letter to an adoption agency to plead their case to adopt a thal child, it was I who wrote the letter, not TIF. (The adoption was approved and I like to think my argument, based on that country's own child policies, had something to do with the balance weighing in favor of the adoptive parents). As much as I do that is visible in posts for this group, that is about half of what I actually do. I do just as much research to answer personal messages as I do for posts. Basically, I do almost anything asked of me by patients and families and friends. I would hope a full organization could try to keep up. As much good that TIF has the potential to do, it just isn't working as far as giving patients a place to find help. We have filled that role by volunteer work of the members and administration, not for some reward but because people need help. Very simple isn't it? What a concept. Maybe the world could learn a thing or two from us. Anyway, much of the focus of my post was on the fact that patients can't afford this conference. I wish TIF would demand that a location can provide sufficient reasonably priced accommodations before they agree to hold a conference there. I know patients who live fairly close to Singapore and travel expenses would not be a big issue but between the registration fee and hotels, there is no way they can manage it. So much of the content of the conferences is aimed at patients and families and it's a shame more of them can't go. I feel it is a very valuable experience for all and more of an effort should be made to make the conferences more realistic for people in terms of cost. It shouldn't be some elite gathering. From what Eponine has said, TIF does almost nothing to help organize the conference, leaving it up to a mostly volunteer organization to arrange the whole thing. Why can't TIF help arrange at least the accommodations? Find some general sponsorship to work out better deals with the hotels to make it an affordable venture for patients. The president of TIF has extensive experience in the tourism industry and perhaps that should be put to better use for the conferences. I don't want locales to be disqualified because the cost of living is high there, but if TIF is going to choose the locales, then they should do more to make it possible for patients to attend.

And I agree, Miaki. Patients have to speak up and speak loudly. The professionals assume they know what everyone wants and needs but often they miss the mark. Patients need to express exactly what they want. TIF should hear from people about making conferences an affordable experience for all.

I'll take that oxygen now. 

I HEAR YOUUUUUUUUUUUUUUUUUUUUUUUUUU I know who and what you do for the forum here.

My midnight your morning, meet me on msn (its a date  ) assist me in writing a letter and I will send it off myself and post it on the forum here for all to see.

hmmmm i tried to find a oxygen mask emoticon but failed. However I'll buy you a Singapre Sling in Singapore, coz I know you will be there.

Miaki

I really wonder if TIF would be willing to help me considering that I am sometimes critical of their inability to connect directly with patients. I hope they can look past the criticism and see that I also think TIF has done much for thals in many ways and that we are both trying to do what we can to help thals. Honestly, Novartis is another that could/should offer some help. Although I am at times critical of the profit motive when it comes to life-saving meds, I also do much to help patients understand how to use their products and what to expect and that sometimes patience is required before results will show up in ferritin tests.

To any group or company that thinks I am too critical:

I am here for the patients first and when criticism is due I will not hesitate. I hope all (including myself) can benefit from criticism and can do a better job by working to become better at what we do. Criticism can be of great help and I hope no one will be oversensitive about it and hold it against me, as it is quite apparent that I am dedicated to helping thalassemics.

I am willing to take any help I can get in any facet of my work and would greatly appreciate if any company or group can reach out to our group with a helping hand.

ONE IN...

ALL IN !

OK, so I have this image in my mind of Ashish wagging his finger at me  and saying "Be careful. If you ask TIF for help, they'll send you a bill for dues."  I'd laugh more, but that was what happened to his association. To me, there ia a contradiction if I ask TIF for money, and I know Ashish would've given me some hell about it if I did. I think I'll pass. And as far as Novartis, all I can say is which Novartis? Novartis US? Novartis India? Novartis Canada? I'm not sure I follow this. Have you ever noticed that information from Novartis is country specific? I have. Why is information about Exjade that was added to the warning in Canada that was insisted on by the Canadian officials, only included in the information for Canada? Do they really have to be dragged kicking and screaming to include this info in every country's information? And why is each of these Novartis companies different companies? How can they tell the thals in Hong Kong that the drug, Asunra, which is identical to exjade and made by Novartis India, is made by a company other than Novartis, and so their price is irrelevant to the discussion in Hong Kong?

I do not want to ask for help from organizations or companies where it can in any possible way affect either the perception people have of my independence or more importantly, have me asking myself if I am allowing sponsorship considerations to affect what I am willing to say about them. I feel I can do more good if I am never beholden to anyone.

If I make it to Singapore it will be as always. I will cover the costs because it's important to go. I think the only way this group can ever accept funding is if it's a completely no strings attached and no expectations basis. And if I do make it to Singapore, I hope some of you can join me in raising a glass to Ashish.

Andy, what is so special about the TIF conference, i know that  no body will refuse to attend any and each conference to have the latest informaton, but is there any thing special about hte TIF conference in particular? I ask this because i can see that around the world there are other conferences that are no less important in the subjects disccussed or the professors attending than the TIF conference.

manal

Hi Andy 
I am so proud of you ,
Intergrity is a quality or attribute that money cann't buy,
 
Always
Kathy

Kathy,    Thank you.

Manal,

TIF conferences are the big ones. They draw the most top doctors and researchers. I have not seen a lineup at any regional conference that matches the international conferences. But even more important, is TIF is where the patients go and for me that is so important. Meeting and talking with patients is what the conferences are all about. Very few patients attend the medical presentations. It's not why they're there. They do attend the presentations aimed at patients and parents, but the social interaction with each other, the comparison of treatment in different countries, and just getting a chance to meet each other and see how other thals are doing is great for morale and developing friendships. If not for the fact that I have met so many people in person and made so many friends, I probably would not still be active in this group, as I don't have any personal involvement with any thals in my own life.

I can understand now Andy, may God bless you.

Praying that you will attend this conference

Manal

Hi Everyone,

My name is Sylvia and I work for Resonance Health, provider of FerriScan. I happened to come across your site while doing some research online. As I read through this thread, I realised some of you are enquiring on FerriScan.

I am here to help and provide any information you need on FerriScan. I will do my best in assisting and if there is anything that I can't answer, I'm sure someone in the office would have the answer.

I sincerely apologise for any inconvenience that Resonance has caused in terms of lack of communication in the last 18 months.

We are back on track right now You can count on me if you need any information. I also look forward to forming new friendships here in this forum.

PS: We would be attending TIF in Singapore in Oct. Our Chief Scientific Officer, also the founder of FerriScan, Dr Tim St Pierre would be attending the conference. Other company represetatives to be confirmed nearer to date.

Rgds,
Sylvia Goh

Hi Sylvia and welcome,

We have long been proponents of Ferriscan and I was able to meet with the rep that was at the Dubai conference in 2006. We have a listing for Ferriscan in our section on Treatment centers, at http://www.thalassemiapatientsandfriends.com/index.php?topic=259.0

Can you look this over and let me know if there are any corrections or additions to the links and locations? I can make any necessary changes if you let me know what's needed.

If I make it to Singapore, I'll be sure to stop by your booth and say hello.

Hi Andy

Thanks....I will have a look on what's posted. I'm also a regular on the other thal site, assisting everyone with FerriScan information and updates

In future, I will post FerriScan information on both sites and I'm very moved by the strong support everyone is providing as this is my first time in contact with Thalassaemia and being on this job has greatly opened my eyes to many things.

Sylvia