MPN Voice
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Proposed patient forums in 2014

We are currently in the process of planning forums for this year to be held in various locations around the country, one proposed venue is Edinburgh and we would like to know from you all whether or not you would consider attending. I am asking this question because we did organize a forum in Edinburgh in June 2012 but not very many people came along, it was, despite this, a very good forum. The forum would be on a week day from 2 pm – 5/5.30 pm. So, would you be interested?

We are also planning forums to be held in other locations around the country, including our usual 2 in London. We understand that forums are very important to you all as they give you, and us, the chance to meet and talk and hear from leading experts in the field of MPDs, and we would love to be able to hold one in a town near you, other proposed venues are Newcastle, Hull, Manchester, Cambridge and Southampton, we do not yet have any confirmed dates for these forums but as soon as I have the dates, times and venue details I will post them on our MPD Voice website, I will send out an email notification and postal letter and will also post details on here for you all. We are very grateful to all the consultants, doctors, specialist nurses of the various hospitals who have agreed to host a forum for MPD Voice, they are very kind in giving their time when they are extremely busy running their clinics.

I look forward to hearing from you, you can either put a reply on here for me or you can email me at maz.cd@mpdvoice.org.uk. Please note that I do not have any dates confirmed for any of the forums yet.

Kind regards,

Maz

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Hi Maz, I've been to around half a dozen forums over the years and they are excellent. I can't imagine the amount of time & effort that goes into organising them however may I be so bold to suggest that more time is allocated to patient interaction and discussion. The forums I have attended in the past (London, Edinburgh and Newcastle) consist of MPN experts talking at you for 95% of the time and 5% patient interaction. I would say 50 / 50 would be better.

Sometimes I think the organisers of these events forget that many MPN'ers have problems with fatigue, concentration etc so sitting listening to experts talking about quite complicated stuff for long periods can be quite demanding.

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Hi ETphonehome, you may indeed be so bold to make this suggestion, and of course I will pass these comments on so that when the programmes are being sorted out we can make sure there is more time for people to interact more with the health professionals and other patients which is very important to us all as we can learn so much from each other.

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totally agree patients need more time

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Hi maz

I would be interested in attending the forum in Edinburgh

Andy

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Hi Maz many thanks to all of you for all your hard work in sorting out the forums. I attended the last but one London forum and found it really helpful. I would love one in Manchester but if at all possible I would travel.

Many thanks

Diana

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I'd be interested in a forum in Cambridge, though am also happy to travel to London. I got out of the loop in the last couple of years and found it difficultt to discover when the London ones were happening.

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Hi revfee, I will put details on here about forums for everyone, are you registered on our mailing list to receive news and updates from me? If you send me your name and email address I will check that you are on my list, send it to maz.cd@mpdvoice.org.uk. Best wishes, Maz

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Hi Maz - any chance of a forum in the Midlands for those of us based there..? Leicester, Nottingham, Coventry or Birmingham for instance.

If anyone else is interested in these locations please reply to confirm.

Thanks

Andy

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Hi Andy, have just sent Maz an almost identical reply, before I had read yours. So obviously there are at least two of us! Anymore Midlanders out there who would be interested in a forum in the Cities listed.

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I would be interested in attending a forum in EM it would be good to meet others with pv in the area.

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Midlands would be good.

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Hello Maz...I live in East Yorkshire & would be keen to take part in a Hull forum. Pete

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Hi Maz, I'm surprised that there hasn't been a forum in Birmingham before now considering the amount of hospitals that are holding clinical trials. Also the large catchment area that it covers. Regards Nick

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We will see what we can do about having one in the Midlands, we are 'in talks' as they say with consultants so hopefully we may be able to have one in this area. Maz

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That would be good, Thanks Nick.

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Thanks Maz - will wait to hear..! Andy

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Hi. I would certainly be interested in a forum in Edinburgh

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Hi Maz, I would welcome a forum in Manchester, or even my home city of Sheffield!

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Hi Maz

Regarding the forums, I'd be interested in the Hull venue, I live in Doncaster.

Mike

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Cambridge would be good

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London or Cambridge would be good afternoon preferred

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Northern England would be very helpful

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Hi Maz,

Many thanks for all the work that you, Alisia and the many other people involved put in to organise, and when you attend the forums. Much appreciated.

Depending on dates, I will definitely attend the Manchester forum as you know, and possibly the Cambridge and London forums.

To anyone reading this, who may not yet have attended a forum, please do think about it - they're incredibly informative, ( patients are treated as intelligent people who deserve to know not only the details about the blood cancer that they have, but it's treatment, and the all amazing research and new drugs that are being developed all the time ) you will also meet the most wonderful people, patients and specialists alike, and find it a positive life enhancing day.

A very far cry from, as someone once said to me, "isn't it just a lot of poorly folk sitting in a room together bemoaning their lot?!" Definitely not.

Go on, give it a whirl, you won't regret it!

Best wishes

Louise

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Don't you just love the enthusiasm of all these people ??most of us have never met .yet we sound like a family ,we long to meet each other face to face !!

I can tell you it's a gas ,gas,gas,, but it's a learning curve as well ..exchanging ideas how to cope day to day with the curve balls life throws at us ,,the doctors give their time and expertise ,worries are aired ,we go home enlightened so feel more empowered ,,I can't say how it has helped me personally ,,looking forward to the next ones ,putting faces to names ,, Keep twinkling. Xxx

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Hi Maz, for me would be best London and Cambridge, since it is rather difficult to travel.

Wishing you best.

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Hi Maz

I would be interested in attending any forum in Edinburgh.

Cheers

Allan

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Hi Maz, I would love to attend the Edinburgh forum depending on the date in June. Can I also be cheeky and suggest that the forum not be dominated by ET which I felt was the case the last time. Being in the minority I felt a bit left out and really could not interact with the speakers . Maybe its just me. You do fantastic work, long may it continue.

Anne x

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Hi Maz, I should be able to attend an Edinburgh forum. Just changing jobs at the moment so hopefully this will still be okay. Regards Aime x

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Hi Maz - I don't suppose there are any forums for those of us who live in the middle of the country. Birmingham, Coventry, Leicester, Nottingham? All of the proposed venues are quite a distance from the Midlands. Maybe we don't have any specialists who are located here, but would be interested to know how many people with an MPD live within an hour or so of any of the Cities that I have listed? If you are out there please make yourself known.

Amarylis

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Hi Amarylis, as I said, we are working on it, a forum in the Midlands would suit me as well, I live in Derbyshire so easy for me to get to as well. Maz

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Hi Maz

I'd certainly be interested in attending either Manchester or Hull - not so sure about Edinburgh though.

Thanks

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Just read through some of the other comments and locations - Nottingham would be a good and would possibly consider the Midlands / Birmingham area.

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Yes definitely, the two I have been to have been very helpful

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As I am lucky to be near London I look forward to getting those dates. It really is so encouraging to know we can be together even if only for a few hours. One gains so much 'umph' from the positive experiences at the forums and knocks all the dark corners into the light. Thank you for your hard work and also thank you for the booklet on PRV - jolly helpful.

Very best wishes.

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Hi

I definitely would be interested. I live in Pontefract so anything Northern would be great.

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I would just like to say thank you to you all for answering this question and for your suggested venues, my list is getting longer, and also for your lovely positive comments about the forums, we really enjoy meeting you all at the forums and look forward to seeing old and new faces this year. Maz x

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Hey there maz , it's those little touches of caring at the get together forums that makes us know you listen and care ,, At the forum in Colchester recently when the food was served lovely snax ,,buns ,,all sorts ,,also a wonderful fruit basket was on the table as we all sat around together to chat ,those of us with intolerance to gluten ,thought that was so kind ,,it was an excellent ,informative ,afternoon , Twinkly. Xxx

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HI maz count me in as long as i know the date that should be ok with me

best wishes

nicki xxx

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Hi

Im all for one in the midlands too as in Derby

Paul

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I would support one in the midlands as well

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Hello, Will there be another one in Cardiff?. Thank you

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Hi Babbittybumble, I don't know at the moment, I will add it to the list. Maz

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Yeah on a lighter note I suppose a get together on my home planet of Naboo wouldn't add greatly to Maz's logistic nightmare, however if not there would be a number of disappointed Gungans. . but please don't let that influence your final choices.

And to my mate Skodaguy dont even consider the trip as your vehicle will disintegrate on entry to our atmosphere. . . . . Now where did I leave that wine bottle. .

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Hmmmmm, planet Naboo, might have to work a bit on my inter-galactic travelling skills, but you never know, I have many talents! Maz x

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Cheers Maz and thanks for all your hard work on all of our behalfs, Im sure whichever venues you determine will be fine for most. Cheers for putting it out to us as Im a firm believer in asking the customer whatever the 'product' is. There are a couple of herbal products that make 'space' travel entirely possible, , , apparently.

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Failing that BLACKPOOL has loads to offer especially since the 'party' conferences abandoned it. Dont let '999 whats your emergency' put you off - its worse than that. But there are many redeeming aspects once you get past the dross. . It would be best during the illuminations at the back end of the year tho. . Cheers

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Hi Maz, I attended the Edinburgh forum in 2012 - and it was very interesting. I would definitely be interested in attending another Edinburgh forum. Kind regards Anne

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Sheffield would be good for me if at all possible.

Kind regards

Jane

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I agree with many other replies that the Midlands would be great :)

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Hi Maz, I would love to come to a forum but live in Moray which is north of Aberdeen so would not be able to attend one in Edinburgh. I attend Aberdeen hospital so could manage Aberdeen. It is a lonely condition as I have yet to meet another person with any of the three MPNs. I have ET, diagnosed in 2010.

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Hi Ballycool, I will see what can be done, it may not be this year, but myself and the rest of the steering committee have said we would like to get one further north into Scotland, rest assured that we are working on it. In the meantime, I don't know if you have a buddy, but you might feel less alone if you had one, if you would like some more information email me at maz.cd@mpdvoice.org.uk. Maz

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I would like to see another one in Newcastle.

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Hi,

I am in Bolton so...as near as possible...:-)

MLA

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Hi,

Have only just seen this thread, I too live in East Yorkshire so Hull would be of interest to me.

Kind regards

Andrea

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Hello Maz, maybe your experts would like to satisfy their life long urge to visit Australia. I know it is not close by, but it is a lot closer than Planet Naboo. If anyone in Au has a MPN I have never met them. I was diagnosed with ET in 1993, before the JAK2 mutation was discovered, and recently was tested for JAK2617F and Exon12, negative for both. it would certainly be good to hear from experts working on those MPNs with other mutations (or none) to see what they have discovered.

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Hi Graymare, I am sure one or more of them would love to come over to Australia and hold a forum and meet you. You should get in contact with Samantha Soggee who is the National MPN Co-Ordinator for The Leukaemia Foundation in Australia, leukaemia.org.au/blood-canc... don't be put off by the name of the organization, they also cover MPNs. Samantha is very keen to help as many people as she can with MPNs and does hold meetings around the country, her email address is MPN@leukaemia.org.au. Best wishes, Maz

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Mazcd, thank you very much for this info. I will do that. Thank you also for your help in finding out answers for people on this forum. It is very much appreciated.

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