MPN Voice Patients’ Forum London 24th July 2015 – video of the full forum now on the MPN Voice website

[Mazcd]

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.

You can view the video on the MPN Voice website here...mpdvoice.org.uk/living-with...

You are not required to login or register with MPN Voice to view this video.

Also available to view on the same page as the video, are the presentation slides used by Dr Radia, Dr Lambert, Prof Harrison and Prof McMullin.

[JediReject]

Thank You Maz and Team , I couldn't watch live but will catch it up for sure. . .

[crapaud]

At last I was able to catch up on the video - very good and many thanks.

Following the presentations I have a couple of questions:

- Were any records made of the breakout group discussions ( I'm personally interested in the MF).

- Are the presentations available (advances/research in treatments)

- Do the treatments linked to JAK inhibitors also work for JAK2 negative patients?

- Are there posters/leaflets available on the net concerning the September blood cancer awareness month, I live in France and have seen nothing.

Many thanks once again.

Crapaud

[Mazcd Partner MPNVoice in reply to crapaud]

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.

[Paul42 in reply to crapaud]

Hi

Jak2 Inhibitors have been proven to work for JAK2 negative patients. All to do with the signalling..dont really understand it but there you go.

Paul

[Mazcd Partner MPNVoice in reply to crapaud]

hello again, yes the treatments linked to JAK inhibitors will also work for JAK2 negative patients. Maz

[Mazcd Partner MPNVoice in reply to crapaud]

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 [e-mail] 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

[crapaud in reply to Mazcd]

Hi 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.

Crapaud

[Mazcd Partner MPNVoice in reply to crapaud]

Hi Crapaud,

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 [e-mail].

Best wishes, Maz

[hackett]

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

[TimEllis]

Hi Maz, I just noticed and thought you would like to know that the link to this video no longer works. Tim