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New Horizons 2009 in Lissabon, will some of you be there?

From the 26.th - 28.th of June 2009 the conference New Horizons for CML and GIST will take place in Lissabon. I will be there and I would like to know, if some of you are there, too.

My son Patrick was diagnosed with CML at the age of 9 in Oktober 2006. He is in a trial with Dasatinib, after Imatinib affected his liver.

We host the only german website/cml patient group for children with cml (as far as I know).

Does anyone of you know an english CML site that deals with children with cml???

I will be at the conference with Jan from the german leukaemie-online - Forum and would
like to get in contact with you before the conference takes place.

P.S. Sorry for my poor english... :D

www.cml-bei-kindern.com

Hi Ulli - your english is better than my german :)

try http://www.childrenwithcml.org.uk/home.asp?parent_id=1 for a site for CML and children

rob - http://cmlblog.spaces.live.com

Dear Ulli,
Welcome to this forum. The New Horizons in CML and GIST conference is for patient group organisers. Jayne, who runs the Children with CML group (see the link under their logo on the left side of this page) is unfortunately unable to attend this year due to other commitments. However I am sure she will contact you.
I look forward to meeting up with you at the conference on 26th June.
Best wishes,
Sandy

Hi,

thanks for your answers, Jayne contacted me when I had difficulties to join her forum.

Do you know any other patient groups that deal with children-CML? I know its a very rare deasese for children, but I expected rather more internet platforms dealing with the topic.

I have only about 2-3 contacts with other parent A MONTH (!!!) although in Germany there are over 100 children diagnosed with CML. For example I expected to find rather big patient groups in the US, but drew a blank until now...

Bye!

Ulli

The Listening Monks of the Discworld have found out what happend before the Big Bang:

The most skilled monks have, when questioned, identified the first sound as: "One, two, ONE, two, three, four..."

Dear Ulli,
have you tried the childhood CML discussion forum on Jerry Mayfield's US site?
Your can fine the link to his site on our 'Links' page.... or click on the following:

...www.newcmldrug.com/Children

Sandy