Three MPN Voice Patients’ Forums confirmed

[Mazcd]

We are very pleased to announce details for 3 MPN Voice patients’ forums in Manchester, Llandudno and Aberdeen.

You are very welcome to attend any of the forums regardless of where you live or which hospital you attend, if you are willing to travel we will be happy to see you. You are welcome to bring your family and friends with you. Forums are free to attend.

If you would like to attend any of the forums, we do ask that you book to attend as we are restricted to a maximum capacity at all the venues, which we cannot exceed.

For full details for each forum, including how to book to attend, click on each link.

Manchester - Saturday 6th July 2019

10.30 am – 3 pm, registration from 10 am

Venue: Lecture Theatre 1, Ground Floor, Undergraduate Building, Manchester Royal Infirmary, Oxford Road, Manchester, M13 9WL

mpnvoice.org.uk/get-involve...

Llandudno – Friday 27th September 2019

1.30 – 5 pm, registration from 1 pm

Venue: The Imperial Hotel, The Promenade, Vaughan Street, Llandudno, LL30 1AP

mpnvoice.org.uk/get-involve...

Aberdeen – Tuesday 26th November 2019

1.30 – 5 pm, registration from 1 pm

Venue: The Aberdeen Altens Hotel, Souterhead Road, Aberdeen, AB12 3LF

mpnvoice.org.uk/get-involve...

We will be announcing dates for more forums and the Living with MPNs Day very soon.

We hope to see you at one or all of the forums.

[EleanorPV]

This is very exciting. I love these patient forums. They are always very informative and its very helpful hearing other patient experiences.

[Stevesmum42]

Great. Looking forward to attending one. Thanks Maz

[EleanorPV in reply to Stevesmum42]

Me too 😞

[ET500]

Signed up for Aberdeen, 1st one able to get too. Looking forward to meeting others and their experiences with these conditions..

[EleanorPV in reply to ET500]

Will be lovely to put a face to ET500.

[hunter5582]

A quick note of thanks for hosting this forum. I have learned a lot from chatting with other MPNers. It also helps me organize my own thinking about my situation when I respond to other's questions. Though I live in the USA, I find the communication with all of y'all over the pond to be a real boon. Do you happen to know of any coming forums or conferences based in the USA that would be worth attending? Thanks

[Kimmy53]

Hi I’m thinking about coming to the forum at Llandudno, can you explain a little about them , as I’ve never been before and wondering if it would be useful for me , as this is all new to me , and am still trying to understand it all

Kim

[Mazcd Partner MPNVoice in reply to Kimmy53]

Hi Kim, forums are a place to meet fellow patients, haematologists and nurses, share support and learn more in a relaxed setting. Our forums follow the same format, we have 2 or 3 of the local haematologists giving a talk about MPNs and the latest drugs and trials available, and ways to cope with living with a MPN; a talk from one of the nurse specialists; a patient talking about their journey with their MPN; a family member talking about their journey of living with and supporting someone with a MPN; and a question and answer session.

We also have breakout groups, where we split into 4 groups, one group for each of the MPNs and a family and friends group, the breakout groups give people the chance to talk more in depth about either ET, PV or MF and the family/friends group gives the family/friends a chance to talk about how they are affected and cope with living with someone with a MPN. Each of the groups are facilitated by one of the consultants who are then able to answer questions and give support and advice.

Forums give people an opportunity to learn about the latest updates with medications, trials etc, and to meet other people with MPNs, so that you can learn and share experiences.

All forums are free to attend and you are most welcome to bring family and friends with you.

Myself and my colleague Nona attend all forums, and we bring along our drug and disease booklets and other MPN relevant information.

Kind regards, Maz

[JackLina]

Hi Maz

Are these last year's or this year's without an update?

Hope you are keeping well.

Best regards

Penelope

[Mazcd Partner MPNVoice in reply to JackLina]

Hi Penelope they are this years, they have the dates on them. Best wishes, Maz

[JackLina]

That's really unfortunate. I would have attended the Manchester one if I had seen it before now. Where should I have seen it? I visit this site daily but never saw it, even though I was looking out for one. All the best P

[Mazcd Partner MPNVoice]

Hi Penelope, the post as it is above is where you would have seen it when I put it on which was 4 months ago, so I don't know why you missed it. I also advertise forums on our website mpnvoice.org.uk/get-involve...

and I send out an email to everyone who is registered on our mailing list and I also send out a postal invitation letter to everyone who is registered on our postal mailing list. I don't know if you are registered on one of our mailing lists, but maybe it would be a good idea for you to be so that you would then receive the information about forums, if you can email me with your request to be added either to the email list or the postal list I can add you, if you would like to be added that is, please email me at [e-mail]

Maz