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Paris Conference (NF2)

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tony:
There was a 4 day(?)  event in Paris to discuss NF2 - treatment, out comes etc etc
just recently - some suprising results
Firstly accepted wisdom is 1 in 40,000 - Evans (leading expert, manchester based, UK)
is now contradicting this - he is suggesting 1 - 25,000 is the true UK stats/av
USA may struggle to really centralise the data due to nature of the healthcare system
- the real USA figure is as likely 1 in 25,000
Secondly very anti radio therapy - no mention at all of Gamma knife options
FSR got a poor press - yet surgery hardly a wonderful (only) option
Between the offical report "Gene therapy understanding/ treatment options"
appears on the Horizon but nothing definate
They appear closer to redefining the nature/forms of the condition
(I think gene therapy may prove the least damaging treatment option
but dont ask me when)
best regards
Tony

Jeff:
Hi Tony,
Thanks for reporting this. Do you have a link that I can follow to read more?
Jeff

jerseygirl:
Tony,

Is there a website for this conference with statements, materials, consensus? I am interested in any information at all.

            Eve

Jeff:
Perhaps this is what what Tony is referring to:http://www.ctf.org/pdf/professionals/meetings/paris-report06.pdf
Jeff

jerseygirl:
Jeff,

Thanks for finding it!

 Eve

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