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TIF Conference 2011: who is going?

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laiba mukhtar:
good luck to everyone who is going to 12th international conference at turkey...... :goodluck

Dori:
Hello Everyone, So far as I know I have emailed/contact each of you who have posted in this topic. Well, not Ayesha yet. I believe, have high hopes, I will recognize her (you) by myself. If you have not receive a message, please send me one! I would love all who I have met on these forums. Warm wishes, D

This sounds stupid but true. The hospital was overbooked for friday and I have a "free week" this week. What did we do or which choice did I have? I have set my transfusion for monday 9th May! Remember, my plane to Antayla departure at 8:30AM. Both are in Amsterdam, but I need to travel back home. So far, I have not find anyone who can bring me to Schiphol from Amsterdam and going by train is not an option. It's like topsport. I hope and wish for the best. I have considered to call tomorrow afternoon ( less busy) to see if there is another option, but honestly I really need this week to make and study everyone from the past week and two upcoming weeks so far as possible. Plus packing e.g.

If you believe this is very silly to do than please tell me and I will call.

Dore

Andy Battaglia:
This post will also be re-posted as a new post as this is a very important question.

I want as many people as possible to bring this up at every opportunity at the TIF conference. If you see Dr Perrine, please ask for her comments, also.

Many have seen the latest updated prescribing instructions for Exjade, along with the bold black box warning near the top of the instructions. This can be seen attached to a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,1928.msg16165.html#msg16165  Many have expressed shock and fear after reading the black box. Obviously, when we talk about chelators, there is still much room for improvement. There is a chelator based on desferal that would require administration by IV once per week for about an hour. Imagine that. A Chelator you use only once per week. No jabbing yourself. No nausea from your oral chelator. No risk of the several dangers present with Exjade. This drug is called S-DFO (starch desferal). This drug went through stage one trials but the company was never able to secure the financing that would allow it to continue trials. As a result, the patent has now been turned over to another company as payment for a loan. This chelator is just sitting while this company hopes for a buyer. The researcher who developed this drug is more than willing to take charge for any new company that wants to buy this patent and move forward. You, the patients need this drug to be developed and made available.

What I am requesting from anyone going to TIF, is to look for every opportunity to raise the question as to why S-DFO is not being developed and what can be done to bring this drug to trials because the patients need a safe easy-to-use chelator. Dr Perrine is on our side in this and should be seen as an ally. She will be presenting the latest info about her hemoglobin inducing drug at TIF, so please try to talk to her. At any chelation talk, please bring this subject up. We need to get it back in the public eye. What happens in the realm of thal treatment should not be decided only by how much money can be made.

Noreen K:
Hi,

I will be going to the conference in Turkey, me and my mum will be attending.  I have never been to any of the international conferences and therefore really looking forward to it, and excited to meet lots of people.

Not really sure what to expect though, but hope to learn a lot from it and also have fun.

Hope to see you there!

Manal:
Andy, this is really a very important point. The more we have chelators, the more there will be compliance and safety. Hope our friends will discuss this point

manal

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