Anyone from Ireland?

We are extending our network to Ireland and N Ireland and aim to create a specific support network for MDS patients and carers there. Please register your interest - and use this platform to communicate.

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

Anyone from Ireland?

Post by sophie » 29 Mar 2011 11:46

Please say hello.
We are working on a date for an Irish and Northern Ireland Patient Forum - in Dublin - with Dr Enright.
We'd like to then create a Irish area support group. Please get in touch :)
Sophie
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.
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Dublin Patient Support Group

Post by sophie » 08 Jun 2011 13:56

Dear all,
as posted on our main website - we have a Dublin Meeting!
Date: 17th June 2011
Time: 10am to 4pm
Place: Davenport Hotel - Merrion Square
Full agenda is posted on our website
http://www.mdspatientsupport.org.uk

Patient Liaison - Sophie
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.
Bridget Megarry
Posts: 1
Joined: 08 Feb 2013 04:55
Contact:

Re: Anyone from Ireland?

Post by Bridget Megarry » 13 Feb 2013 10:05

Hi Sophie and anyone else from Ireland!
I was delighted to see that you are hoping to establish a support group for Ireland and would like to be in it, please.
So far I have only met one other person in Dublin who has MDS. He fits the typical profile of the disease, I gather and is a man in his seventies and we attend hospital on the same days for our azacticidine treatment.He's doing really well and is on round 20 of treatment.
I have RAEB MDS and gather I am young to have it. I am( or was )a fit 58 year old woman who has never been ill before so am finding it all quite challenging but am doing well on the treatment so far.(round 4).
Would love to chat/meet up with anyone else from Dublin to share experiences.
Bridget
sophie
Posts: 249
Joined: 20 Nov 2008 14:05
Contact:

Re: Anyone from Ireland?

Post by sophie » 13 Feb 2013 19:17

Hi Bridget,
a warm welcome to you.
Glad to hear from one more person who wants to help out in Ireland.
There actually are some informal activities set up by a family in Ireland - and they are mostly posting news on Facebook.
If you do use Facebook - this would be the easiest and quickest way to connect to them.
Just do a friend request and leave a message for them.

Their facebook page is called MDS Ireland:
https://www.facebook.com/mds.ireland.7

We also have a few other people on our list of members - based in either Ireland or Northern Ireland - but not using Facebook - to the best of my knowledge. If you would like to email me your contact details - I will forward them to the other people.
I cannot do it the other way - due to patient confidentiality.
Please email me on mds-uk@mds-foundation.org
None of the members in Ireland seem to be using this message forum very much - but I hope this may pick up soon.
Feel free to communicate with others on here - and exchange phone numbers via a private message if you prefer to talk on the phone with someone.
And of course do contact me if you have any specific questions I can help with.
I look forward to hear from you.
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.
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