Patient Power

[Garden987]

Hi everyone. I wonder if any of you find Patient Power helpful. Much of what they say is not available here as they are in the States so may not be relevant here. Thanks. Hope you are surviving this hot weather! Mary

[Helpatlast]

I find it a very helpful site and like here it's reliable and trustworthy, being well administered. I also have enjoyed joining in on line to a lot of the town meetings via PP in the USA - so interesting to listen to ones such as Reuben Messa. I think it's a good site to recommend to any of us MPNers

[socrates_8]

Hi Mary... :–)

Yes, I too find PP a useful tool as websites go. It hosts a few recorded meetings as well as usually has a Q&A every so often where anyone can ask questions. Generally speaking, I find it a valuable addition to MPN Voice/HealthUnlocked, and I am in Oz of course...

Best wishes

Steve

[Hidden]

Hi Mary

I like to access Patient Power on a regular basis and in particular if I am seeking specific information. I also enjoy listening to the forums and what the medical professionals and researchers have to say.

Regards

Anna

[Wentry]

Hi Mary,

I use it regularly for information too, even though I'm in NZ I find their information really helpful, I joined a Webinar recently about trials and learnt quite a lot as I knew nothing about them really 😁

Wendy

[mhos61]

I agree with the others.

I find the videos and in particular, ‘ask the experts’ to be very educational. Research is discussed too, giving us hope. We need all the knowledge we can get with this rare condition!

I’m signed up and receive emails weekly.

Mary x

[Garden987 in reply to mhos61]

PatientPower. THanks to all of you who responded to my query. My thinking was that some of the suggestions were not,to my knowledge, available in this country. I was also interested in the outcome of research

and when we are likely to benefit from it here. BUt in. Jew of your enthusiasm will check it from time to time. Take care everyone. Mary