Topics of interest to all thals?

I would like them to talk about the possibility of pairing the L1 with exjade. Also it would be great if they can actually visit the possibility of ensuring that the standard of care internationally is equal and that the patients are all benefiting from proper care.

A website dedicated to patients should also be offered by TIF with a person assigned to offering advice on a full time basis to deal with the varying hours internationally.

A magic wand to get rid of our problem would be the ideal thing as well.

A website dedicated to patients should also be offered by TIF with a person assigned to offering advice on a full time basis to deal with the varying hours internationally.

Hi,

I think that the members here are doing a better job than TIF can ever do in this regard; don't you think?

Sajid,
I do agree but I think that if TIF is our main body representing us then they should also provide a FAIR and unbiased basic service to everyone. Dont you agree?

To date I have had the experience of being treated in three different countries and my experiences have all been different. In some cases I feel the care offered is not what is best for us but what is available. Having an active main body representing us should ensure that basic guidelines are mandatory for each country.

assistance should also be provided for each country in order to maintain the level of treatment. You shouldnt be playing russian roulette for your provision of medication, dont you agree?

 

Hi Eponine

I'm Sylvia from FerriScan : non invasive measurement of liver iron concentration.

Let you know if you are interested to touch based on managing chelation. FerriScan is often used by hematologists to manage the chelation's dosage. By knowing the amount of iron stored in the liver, hematologists can work out the best chelation based on what the body needs.

Our Chief Scientific Officer who is also one of the founders of FerriScan, Dr Tim St Pierre, would be attending this conference. Maybe he could give a talk or something similar? Let me know your thoughts.

Hope to hear from you soon.