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EGT - company working on cures for Orphan Diseases

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§ãJ¡Ð ساجد:
This is really exciting!

I hope that they reach the marketing phase soon.

I just can't wait! :jumping

Nur:

 :love  :clap  :wub
I am so happy about this breakthrough. I really hope that the trials would go smoothly and will not be facing any difficulties. After a lifelong journey of being a thalassaemic, i am hoping so much that somebody will find a cure for Thalassaemia. I don't want to get too much excited so soon because i'm afraid it would not work out perfectly. I just don't want the bad news   :pray

Andy Battaglia:
A very interesting note about Patrick Girondi, founder of Errant Gene Therapeutics, is that his own son has thalassemia. He has a very personal interest in thalagen research. I wish them the best of luck with their trials.

In our own ongoing poll at http://www.thalassemiapatientsandfriends.com/index.php?topic=144.0 gene research is the highest priority according to those who have voted. After speaking with Dr Sadelain at the Dubai TIF conference in 2006, I came away with the impression that gene therapy will provide a cure for thalassemia. I do not know how long it will take from beginning trials to eventual approval, and it will most likely be years, but for those who are daring, once these trials begin, there will be a need for patients to participate. This may be the only way to attempt this cure for many years to come.

With this in mind, how many patients here would be willing to take part in such a potentially great trial which may lead to them being cured, but with unknown risks, but also pioneering what might be a cure for ALL thals? Would you be willing to participate?

§ãJ¡Ð ساجد:
Count me in!

We all have to die one day so why not die trying? If everything goes well maybe they can actually cure the test subjects with no side effects! If not then at least they would know what went wrong and take it into account for the future.

It's a sacrifice that one has to make for the future generations just like the sacrifices that our forefathers made for us in many aspects.

Nur:
Right said Sajid  :agree. I am also willing to give it a try. I know that it have it own risks and all...but as an older patients, i have been on trials wether i know of it or not.

With Desferals and transfusions in the early 1980's that too have gone through a lot of changes during these years. And that is a trial in itself. Even exjade is a trial on it's own even if it is being used widely in some countries. So i am willing to take part in the Gene therapy. I want a cure of Thalassaemia to come quickly.

It's also a good thing that Patrick Girondi's son have Thalassaemia. At first, I am wondering how Thalassaemia get's the spotlight on being researched. Now i know  :smile

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