The patients’ forum held in Guy’s Hospital, London, on Friday 24th July 2015 was attended, in person, by 140 people, we were also joined by 260 people watching the forum live online, this is the first time that one of our forums has been streamed live to a worldwide audience.
The programme included talks from leading MPN specialists – Professor Claire Harrison, Professor Mary Frances McMullin, Dr Deepti Radia and Dr Jon Lambert, with subjects covering symptoms and how we manage them, early results from the MOSAICC Study and the latest research in MPNs and medication. The programme also included talks from three inspirational patients.
We would like to extend our thanks to Patient Power for facilitating the streaming the forum to the online audience and for sharing this video with MPN Voice.
Hello Crapaud, so pleased that you have been able to watch the forum. No, there are no records available from the breakout groups, they are very confidential and we cannot share any information from them. I am hoping to be able to put the presentations on the website shortly. I will check about the JAK inhibitors for you. The poster for the September awareness coffee mornings will be available soon on the website along with an announcement. Kind regards, Maz.
Hi again, the presentations to accompany the talks are now on the website, on the same page as the video mpdvoice.org.uk/living-with... and the packs for the September Blood Cancer Awareness month are now also ready, if you would like to email marilyn@mpnvoice.org.uk she can send you all you need, we are happy to post the flags, balloons and money box to you in France, but you don't need to have these for your event, we can email the posters and information pack to you. Maz
I've just started my BMT process in hospital (fingers and everything else crossed!) so won't personally be able to organise an event; however is someone in my family in the UK allowed to organise such an event?
The posters and information pack by e-mail may also be interesting to help spread the word over here in France (I live in a relatively highly 'English polluted' area).
Best regards and thanks for the continued support.
good luck with the BMT, I hope it all goes well for you. And yes, anyone can hold an event, so if someone in your family would like to then we can send a pack to them, and also to anyone you know in France, if you could email Marilyn with the address details, postal and email, she can send all the relevant information, her email is marilyn@mpnvoice.org.uk.
Hello Maz. Thank you again to all who facilitated and participated in the MPN Voice Patients Forum. It leaves a sense of greater belonging and understanding. I wrote longer in the Taiwan posting. Regards Jan
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Full length Replay of Friday London MPN Forum Now Posted
