MPN Voice Patients’ ‘virtual’ forum, London - VIDEOS now available

[Mazcd]

This MPN Voice patients’ ‘virtual’ forum held on Saturday 1st August 2020, was hosted by the Guy’s team and featured updates on both COVID and MPN research, as well as tips as we move forward.

The videos of the presentations are now available to view on our YouTube channel, for more details click this link

mpnvoice.org.uk/about-us/vi...

(all information in the videos is correct as of 1st August 2020 and is subject to change, you are advised to check NHS and government information regularly for updates)

With grateful thanks to all the speakers who took part in the forum.

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Thanks will check it out

[EmeraldA]

Brilliant thanks much Maz. I had posted a question about putting my name forward for the Mosaicc study with Prof. McMullan. How best should I go about this? Thanks!

[Mazcd Partner MPNVoice in reply to EmeraldA]

Hi Emerald you need to speak with your haematologist who can advise you about the nearest centre to you: The MOSAICC study is opening across 18 sites in the United Kingdom in 2020/2021. Sites in the Republic of Ireland are planned when funding is secured. The study is investigating the causes of myeloproliferative neoplasms and will involve completing paper questionnaires, participating in a telephone interview and providing blood, saliva and toenail clipping samples. Only patients who have been diagnosed in the last 24 months will be eligible to participate. If you meet the eligibility criteria and your hospital is participating in the study your consultant/research nurse will ask you about participating in the study during a routine appointment. It is really important that we hear from as many eligible patients as possible so if you are invited to participate we would encourage you to do so.

[EmeraldA in reply to Mazcd]

That's brilliant. Prof McMullan is at my hospital. Diagnosed less than 24 months ago so that's good too. I will speak to my haemo at my next appointment then. Thanks again x

[DJK12]

This is one of the most helpful forums held and being able to watch different parts of it separately is very useful.

I started at the end and the questions and answers section covered a lot of interesting topics and were particularly informative.

The regional part when Dr Mark Drummond revealed how the shielding list had been compiled for those of us with mpns in Scotland was a revelation. As this forum showed there was utter confusion as to why some were getting the letters, others weren't and the 2 big blood cancer charities were saying something different.

I echo other people's thanks for the time and effort everyone who took part put into the forum.

[Fizzydog]

Thank you Maz

[Nikou]

Thank you for providing the video of the Forum. I just watched it and found it very useful.

[azaelea]

Thank you Maz. I shall watch it with interest.