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CML earth

Just wanted to let you know about this website - it's quite recent - the idea is for CML patients worldwide to register themselves & so form a single community, it's run by Novartis
barbara

Hi Barbara, this looks very interesting, but i tried to register and i got a message saying that the site has not yet set up for UK. I may have to retry it later, i also see you can register a support group too which is good, following our first meeting in Leeds a couple of weeks ago i am just in the process of setting up a site, which i will post on this site when its up and ready. Has anyone else had the same message on cml earth?
As when it starts up you can see a lady in London, has her profile, maybe this is en example of how it will eventually look.
Chris.

Hi Chris,
I live in France - so that must be why i could register.
I know that people from patient groupus have been involved in the setting it up for France - maybe you should contact Novartis & see when it's going to be up & running in the Uk.
I'm sorry that i suggested it to you - I just presumed that it would work for the whole of Europe,
Barbara

Thanks for that Barbara, i have just set a support group website up for Yorkshire and surrounding areas, Our site is not a patch on cml earth :) put please feel free to join yourself, it would be nice to have some interest from across the waters. Thanks Chris. Its www.cmlyorkshire.webs.com

I went to university at Bradford & used to love the curries & Harry Ramsden's fish & chips, i spent many a sunday at Howarth, & York etc.

Hi Barbara and Chris,
CML Earth is not available for UK or Australian citizens to join. This is because that rules set out by the ABPI (Association of British Pharmaceutical Industry) do not allow companies (like Novartis/BMS etc) to directly access individual patients or collect any kind of data directly.

So this means the rest of the world can happily share details but the UK is excluded.

I am hoping that I can persuade someone from the APBI to meet with me so that I can explain that they need to update their view on this as it is like closing the door after the horse has bolted.
Meanwhile.... I suppose we could try innovative ways which would allow us to join? I have one idea and will let you know if it works

Sandy