The busy beavers at Patient Power have posted the full length replay of the educational forum from Guy's Hospital in London from Friday night. It's not quite as slick as a BBC production, but it's very educational! Here's the link: patientpower.info/video/rep...
Remember, you have to login to Patient Power to access, but it's free and your info is secure. Coming soon will be video clips from other interviews recorded at the event which are not part of this replay.
I hope we get support to this again soon. Don't hesitate to let us know if this is useful.
Andrew Schorr
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andrewschorr
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Thank you very much I have just looked at the replay . It was wonderful to see so much positivity . I did wonder about my husbands listening skills though when he said " what does the N stand for " .
I see you are off to the country of my birth soon have a great time in Ireland and thank you once again .
Thank you so much for the presentation. It has helped me enormously. I have had PV and ET for 7 years and have never heard anybody else with the complaint talk about their experiences. I was emotionally overwhelmed on a couple of occasions and felt such sympathy with the people concerned. I quickly realised that so far I have been so lucky as since my treatment began I have very minor side effects from my MPN.
Once again thank you
Finally! I have just finished watching the broadcast. It looked like a really useful, positive event. Well done and thank you to everyone who planned it, rain it and also broadcast it for those of us unable to be there!
Thank you Andrew and your amazing team at Patient Power, it is great that we could reach so many people by utilising modern technology.. so not all bad this techie stuff eh! It was a great evening, although obviously I was so nervous I cringe at watching the play back, I am glad to have been able to speak and stepping outside of ones comfort zone is where the magic happens.
You all were great,looked great and spoke with confidence,I am going to watch again,I know I missed some things,the second time will be better,quietly on my pad when I rest in afternoon,well sometimes rest !!Grateful thanks to you all.
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I Loved the MPN London Patients forum tonight x
Parient Power
