Angel123 was formerly known as sammyjoe in her posts.
Thanks for the support. I don't really hold out much help that TIF will help me. Being that I am neither a patient or a medical professional, it is very difficult for me to fit in any category. Hence the supporter designation for Singapore. Even though I give so much time and effort to the cause, I am told to register as a supporter so I can pay an even higher registration fee. I asked for Singapore thal association to comp my registration fee and have not heard a word since. Checking the poll results at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1518.0;viewResults tells me that my presence will mean more patients also will attend, so isn't in the interest of TIF and the Singapore thal association to have me attend?
It is very frustrating for me, as the patients and even many doctors recognize the value I bring to the thal world but the organizations choose to ignore me. I admit I am not much of an org person but I am doing the work that none of the orgs is doing. I am also doing much to help patients understand how to use their meds and how to work their way into using new meds, so I agree with Miaki that the drug companies should offer some support. There probably hasn't been a bigger campaigner to have L1 approved in the US and Canada, so perhaps Apotex would be a good place to ask for support. (I just wish they would re-submit Ferriprox for FDA approval. I think the almost universal recognition that L1 is the top chelator for removing iron from the heart, will now enable the drug to be approved). If anyone knows who to contact at the drug companies, please let me know.