Thalassemia International Federation World Congress, Abu Dhabi, 20-23 Oct 2013

Hello everyone!

The Thalassemia International Federation World Congress (TIF2013) incorporating the 13th International Conference on Thalassemia and Hemoglobinopathies  and the 15th TIF International Conference for Patients and Parents will take place in Abu Dhabi, the capital city of the United Arab Emirates from the 20th – 23rd October 2013.

Very soon you will be able to access more information on the dedicated website www.tif2013.org
Many interactive and educational sessions for the patients and their families are planned as part of the program as well as a fun filled social program to give a chance to all participants to network with one another and share their experiences in a relaxed atmosphere.

Abu Dhabi is a great city, very safe and with lots of fun things to do! There are direct flights into Abu Dhabi from most parts of the world and a wide choice of accommodation including quality budgeted hotels and apartments to suit all budgets.

I will be posting updates on the Congress regularly but please don't hesitate to write to me for any information.

Best Wishes!
Manuela

This conference will deny patients admission to scientific programs. TIF refuses to stand up for the rights of patients to have access to all information about their condition and its treatments, choosing instead a policy of arrogance that treats patients as little children. As a result, I cannot support this conference. I see almost no value to the conference and feel that TIF is basically running nothing more than a thinly disguised agenda of tourism.

I do not recommend that those actually interested in learning attend this conference, I certainly will not attend under these rules.

This conference will deny patients admission to scientific programs. TIF refuses to stand up for the rights of patients to have access to all information about their condition and its treatments, choosing instead a policy of arrogance that treats patients as little children. As a result, I cannot support this conference. I see almost no value to the conference and feel that TIF is basically running nothing more than a thinly disguised agenda of tourism.

I do not recommend that those actually interested in learning attend this conference, I certainly will not attend under these rules.

Certainly true.

After all all this research is for us patients, then why in world deny us from attending and learning?

Cannot recognize their objective whatsoever.

-P.

Dear Andy,
I have seen your reply to my earlier post only now - my apologies for not commenting earlier.
The Congress  includes a 3 full day program tailored to patients and parents with many informative sessions, case studies, workshops and plenty of opportunities to interact with leading experts. Also the first day of the congress (20 Oct) will be a joint session for healthcare professionals and patients and parents alike. The first objective of the congress is surely education with the program starting everyday from 8.30am to 6.00pm approx. In my earlier post I had referred to the many leisure activities available in Abu Dhabi as I understand the this is an international forum and I thought that not everyone may have been familiar with Abu Dhabi being a safe and welcoming destination.
The program is available on the website and I trust it covers many valuable topics to help patients and parents with their understanding and everyday management of thalassemia.
http://www.tif2013.org/conference/15th-tif-international-conference-for-patients-parents/
Hope you will join us next month but i appreciate if you feel differently.
Manuela

Manuela,

I am not a wealthy person and the costs to attend this conference are outrageous. In addition, unless you are in the medical profession, you will not be allowed to attend the scientific programs, making this conference nearly useless to me.

TIF is in no way in touch with the needs of the average thalassemic in poor countries and their choice of conference venues demonstrates this over and over. High priced resorts are inappropriate venues if you want to make the conferences affordable. Obviously, this has not been a concern of TIF.

Good luck with your conference. Let me know when TIF wants to sponsor a person who deals with individual thals on a daily basis and who actually makes a difference in the lives of thalassemics everywhere.

Dear Andy,

Thank you very much for your comment. I want to clarify that I do not work for TIF and therefore I can not reply to some of your concerns directly. I work for the local conference organiser company appointed to manage the congress in Abu Dhabi. We are aware that attending the conference can be financially challenging to many and we have therefore looked for ways to keep the cost down wherever possible.
The accommodation choice for example starts at USD 75 per room, per night. By sharing a room, accommodation could cost from USD 37.5 per person a night. We have arranged for complimentary shuttle service from the hotels to the congress venue so that transportation wont be an extra burden to the participants.  The registration for the patients and parents is USD 150 which covers a full lunch and two coffee breaks for the three days.
There are many airlines flying directly into Abu Dhabi as well as Dubai. Low cost carriers  such as AirArabia and FlyDubai connect the UAE to many nearby destinations. Being so well connected and thanks to the geographical location of the UAE which is within 8hours flight range between most of the european cities and the far east, booking a flight to the UAE can be quite reasonable when compared to other destinations.
We have also managed to arrange for a simple process to arrange entry permit for patients and parents requiring one at a very minimal fee.
I understand that all these costs would still prove to be very expensive to many.  I personally think the selection of Abu Dhabi as the host city is not necessarily making them more expensive than what they would be in other destinations but I appreciate if you have a different view.
Im sorry that you wont make it to Abu Dhabi. From the replies I had seen when I first posted on this portal I thought you would be coming. I regret i have not logged in more frequently as I could have addressed some of your concerns earlier.

I wish you all the best Andy and my personal appreciation to the great efforts you place to help thalassemics patients all over the world.
Best Wishes
Manuela

I am happy to hear that some more inexpensive hotel choices have been added, but the cost of flights from the US is still more than I can currently afford.

I don't even get sufficient financial help to keep this website going, let alone to travel to conferences. Some day thalpal will vanish due to lack of financial support.

Hi Andy,

It is heart rending to hear that Thalpal doesn't have enough financial support. I (and I can speak for many other's like me) never thought of how this website is being run or where the funds are flowing from for managing the website. You have done excellent work and your profound knowledge about Thalassemia management has benefited thousands of Thals around the world. Your contribution in this field has been enormous and invaluable. 

I would like to make a humble contribution of 100$ from my side to support this website. While this is my first contribution for this noble cause and might even appear meager, this definitely is not the last one. Let me know how and where can I transfer the funds?

Cheers,
Himanshu

Himanshu, that'll be very kind of you. And by no means it's a small amount. I try my best to contribute too. I think with some what more campaigning we can have a positive impact on lives of many thals around the world.

-P.

Thank you for your offer, Himanshu. Possible ways to donate are Paypal and Western Union. If you choose Western Union, contact me first so you can give correct name information. I also have an account on Xoom, which is also an easy way to transfer money.

I am rebuilding our fund. Because of the late date, I cannot consider using funds to go to the TIF conference, so that means that I will have a fund for purchasing and mailing supplements. I have had to discontinue this in recent years, but wish to begin again, as so many patients have little access to needed supplements.

I can transfer the fund through Western Union money transfer. Please mail the required details to me on himanshu_kr@hotmail.com. I shall do the needful. I am travelling abroad between 10th October to 5th November and hence request you to send details immediately. I shall try and transfer the money by Monday/Tuesday. Other possibility is money transfer through NEFT from the account. Let me know if that works for you.

Regards,

Himanshu,

You can pay through your credit card or MASTERCARD/VISA debit card too over PayPal.com. Its quick, secure and convenient. I use PP for all my shopping as well. Just in case you don't want to do all this manual efforts, also WU has high fees.

Regards,

-P.

Hi Andy,
Do you think the parent part of the conference is of value for parents already in Abu dhabi?
Zahra

Zahra, I do feel that there is value for attendees to some of the presentations. For myself, these would hold little value (frankly, I could give many of these presentations myself), but for most people they do have some value, and you will get a chance to see some very good doctors speak and may get the chance to ask questions of them. I've sat in on patient and parent programs before and they don't teach me much and sometimes create frustration for me, due the parochial views of many of the people involved. However, there are things that can be learned about dealing with day to day life of thals, basic ideas about treatment, such as managing combination chelation and what regular tests should be done, that do have value. If I was there, I would go (mostly to interact with patients, parents and doctors).

Hi,
I have been attending the TIF conference and have learnt some things but more than that it was very nice to meet some adult thals and hear their stories.
When a 43 year old thal tells you not to worry, that your son will have a life , that thals have lives and work and families and passions it means alot. So much more than what any doctor could say.

There were secretsries, real estate agents, yoga instructors,  microbiologists and even people who excelled and git into top universities.

I come away from this with renewed hope even though I have learned about many things that can and do go wrong that I didn't know before
Zahra