REMINDER for the Virtual MPN Voice Patients’ Forum – London Saturday 1st August

[Mazcd]

Have you registered for the virtual MPN Voice Patients’ Forum, being streamed live online on Saturday 1st August 2020 10 am – 1 pm (BST)?

If you haven’t registered to watch the forum being streamed live online there is still time, use the link below to register, you will receive a confirmation email with a link to use on Saturday to watch the forum. If you are unable to watch the forum live, a recording will be available on our website and YouTube channel for you to watch at any time.

This MPN Voice patients’ forum is hosted by the Guy’s team and will feature updates on both COVID and MPN research, as well as tips as we move forward. We have colleagues from Scotland, Ireland and Wales joining us to reflect regional differences across the UK.

There will be a live Q&A session to which you can submit questions in advance, via the registration form, and on the day via the webinar ‘chat’ facility, which will only be visible to the panel. Please be aware that the panel/medical team cannot comment on or reply to individual cases, do not send in any test results with your questions, replying to questions on the day is not an alternative to your ongoing medical relationship with your own consultant or GP, so do try to ask general questions and don’t be disappointed if the panel/medical team do not give specific medical advice to you. The panel will only use first names when replying to questions live, i.e. Joe from the UK has asked....

There may not be time during the webinar to answer all the questions submitted, the team will reply to all unanswered questions by email.

Programme – a copy of the programme can be downloaded here

mpnvoice.org.uk/documents/f...

You are required to register for this webinar by completing the online registration form, click on this link

register.gotowebinar.com/re...

you will then receive a confirmation email with a link to join the webinar on Saturday 1st August, the email will contain all the details you need to join the webinar.

This forum is being supported by Guy’s Hospital.

[EmeraldA]

Looking forward to it!Thank you for organising Maz. x

[MFBMT2011]

Can’t be with you on Saturday but, as always, available to help should anyone need it.

Chris (Princess Leia version)

[Pkm52]

Hi Maz.

It's Patty from Vancouver WA. I will get up at 0200 on Saturday.

My veterinarian sent me (so smart and funny) a humorous video. I don't think I can attach so type in Pluto the Schnauzer Covid - 19 advice on your search engine or on youtube. Pluto is 13 and belongs to a Canadian wildlife photographer. If you find it there is a cat that responds to Pluto. It's so good to laugh!

I hope all is well with you. I just ordered some face shields. There is still resistance to wearing PPE. You know how it goes, if you haven't been taught anything about the microscopic world it can be difficult to see any risk. I heard that full face scuba masks were being used. There is an Australian company that has retrofitted the exhaust tube with medical grade filters. I thought they made a lot of sense.

I will let you go. I am going to look up Methotrexate and ET. I think I told you Pegasys is $4,000./month in US.

So.......

Take care Maz,

Patty

[Mazcd Partner MPNVoice in reply to Pkm52]

Hi Patty my lovely friend, hope you are keeping safe and well. Really pleased that you have signed up to watch the forum, and very dedicated of you to get up in the early hours to watch it, I hope you enjoy it.

I have just watched Pluto, oh my goodness, that is the funniest thing I have seen in ages, it is hilarious, and what a lovely little do, I love her advice on social distancing!!

Take care and keep me posted about the meds.

Maz x

[Hidden]

Brilliant webinar - l missed some sections. Will watch again once posted

Thanks for organizing look forward to next one

[Mazcd Partner MPNVoice in reply to Hidden]

Hi Doveme, thank you for your lovely feedback, thank you for watching it, video will be available hopefully this week. Best wishes, Maz

[EleanorPV]

Brilliant webinar. Amazing update date and information on many clinical trials. Many thanks to all involved.

[Mazcd Partner MPNVoice in reply to EleanorPV]

Hi Eleanor, thank you for watching and for your lovely feedback, glad you enjoyed it. Best wishes, Maz

[bruddery]

Just wanted to thank you Maz, and everyone else involved in organising the webinar. Found it all very interesting, as usual full of lots of really good speakers and relevant questions at the end. Thank you so much. Best wishes. Janice (Bruddery)

[Mazcd Partner MPNVoice in reply to bruddery]

Hi Janice, really pleased that you enjoyed it, thank you for your lovely feedback, best wishes, Maz

[JP1952]

Thank you for the webinar. It was informative and easy to follow, it cleared up a few queries I had about the meds we are prescribed which are specific to our particular disease. And the general advice about itching reinforced what many members of this forum have been telling me . I need to get back to some individuals to thank them.

Also, it's great news that research and clinical trials are starting up again.