Webchat online - 6th July 2016 12noon

Details of upcoming events and fundraisers. Please add your own post - and update us about your great challenges. Thank you!

Moderator: Steering Committee

sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Webchat online - 6th July 2016 12noon

Postby sophie » 04 Jul 2016 14:31

Can't make it to a meeting?
Have MDS questions for a consultant?
Have internet access?

Here is a helpful event for everyone - a simple to use webchat online - organised by UCL Hospital:
http://www.mdspatientsupport.org.uk/event/webchat-online-with-dr-beth-payne-uclh-6th-july/

It is a simple Q&A setup.
6th July 2016 - 12noon till 1pm - for the live action chat.
But don't worry if you can't make it - the entire content of the webchat will stay available for you to read on the UCLH website - anytime you want.

You can submit your questions ahead of time - or send them live as the chat is going on - and even make comments.

If this setup is successful and popular - we will set up further events like this.
Please take part, listen in and post your feedback on this chat folder.
We need to hear from you - to we can plan future services in the most helpful way.

Many thanks everyone!
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
petertee
Posts: 6
Joined: 27 May 2014 17:17
Contact:

Re: Webchat online - 6th July 2016 12noon

Postby petertee » 04 Jul 2016 22:47

Thanks for this information, it sounds really interesting and I hope it will be a success.
Peter.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Webchat online - 6th July 2016 12noon

Postby sophie » 07 Jul 2016 18:27

Dr Payne had loads of questions - and stayed on way past the 1pm cut-off time.
Great that many of you took part - and submitted questions.
We had a chat with UCLH already - and they will plan more of these about blood cancers - as this topic is generating the biggest audiences.
Have suggested a transplant only webchat, as UCLH has been doing ambulatory BMT's at their Cotton Rooms hospital/hotel for a while.
We'd like to find out more about this - and the advantages for patients.

We are already talking to our webpeople, Open e-commerce, to see how and when we might be able to run our own webchats.
Considering doing some on specific MDS topics - rather than a general MDS webchat.
What do you think?
And what topics would you be most interested in?
Scientific research on MDS?
Clinical trials and new drug treatments?
How is MDS treated in the USA? What are the differences?
Advances in Prognostic tests?
What can genetic mutations tell us about MDS?
Treatment at home?
Transfusion benefits/burden/issues?
Palliative care?
Financial issues - benefits claims?
Carer issues?
Travel Insurance issues?

Please comment and leave your requests on here.
We can only do these webchats if there is genuine and sufficient interest.
Thank you all
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Kes
Posts: 11
Joined: 14 Jul 2012 13:05
Contact:

Re: Webchat online - 6th July 2016 12noon

Postby Kes » 07 Jul 2016 22:40

Hi Sophie,
I think this is a great idea. The time was a bit difficult as I was at work. I think we should do more of these webchats with all sorts of professionals and supporters and even patients. Anything that gets us all talking and spreads more knowledge about MDS is a good thing.
Thanks for promoting it as well as all the other amazing things you do.
I love the new website. You are a star!
Kes
[color=#0000FF]I was diagnosed initially with RA. Now I'm told it RCMD with hypocellular marrow. It seems I also have a big autoimmune component to my MDS with lots of accompanied joint pain[/color]

Return to “Events and fundraisers”

Who is online

Users browsing this forum: No registered users and 1 guest