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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   UK Meet up (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/192709-uk-meet.html)

Kevscar 08-13-2013 05:48 AM

UK Meet up
 
The CRPS Meet up will go ahead for 12th October as there are sufficient members confirming a place. A programme for the day will be emailed to you soon.

Place Royal National Hospital for Rheumatic Diseases in Bath (The Mineral Water Hospital) - Lecture Hall

There will be opportunities to chat and share experiences with others.

If you would like to attend and have not already confirmed please email Julie on Cadm-crpsuk@hotmail.com

anon6715 09-08-2013 03:22 AM

Hi Kev. I'm so sorry I didn't respond sooner. I've been working far too many hours trying to keep up.

Unfortunately, I'm going to be out of the country for my sister's wedding so I won't be able to make the meet up. I'm really sorry to miss it. It would be great to meet some of the people from here. You have all been really helpful and supportive. Plus, I've never met anyone with CRPS/RSD.

Kevscar 09-08-2013 05:01 AM

Hopefully if we get another debate in Parliment you can make that, have you e-mailed your Mp did he reply

anon6715 09-08-2013 05:10 AM

I emailed my MP before the debate but I never got a reply. Not even an acknowledgement.

tlm0835 09-08-2013 05:52 AM

Quote:

Originally Posted by Kevscar (Post 1006822)
The CRPS Meet up will go ahead for 12th October as there are sufficient members confirming a place. A programme for the day will be emailed to you soon.

Place Royal National Hospital for Rheumatic Diseases in Bath (The Mineral Water Hospital) - Lecture Hall

There will be opportunities to chat and share experiences with others.

If you would like to attend and have not already confirmed please email Julie on [

Hi, please can I get more information on this. Thanks

Kevscar 09-08-2013 06:01 AM

e-mail <adm-crpsuk@hotmail.com>


Proposed Meeting
Date: Saturday 12 October 2013

Venue: Lecture Hall, Royal National Hospital for Rheumatic Diseases,
Upper Borough Walls, Bath BA1 1RL


Provisional Programme
10.30 am – Registration and coffee
Registration – Samantha Fields – Bristol/ London Coffee - Charlotte and Shaun Murphy- Somerset 11.00 am - Welcome and CRPSUK update Part 1 – Rebecca Blight – Bristol Launch of new CRPSUK bookmarks – Julie Weymouth- Bradford on Avon (Special thanks to Withy King, Lawyers in Bath, for their expertise designing the new logo and their support in providing the bookmarks.) 11.30 am - Get to know one another Part 1 12.00 am - My Cycling Challenge – Amanda Nelson – Minety, Wiltshire Amanda has featured on BBC Radio Wiltshire. 12.30 pm - Lunch (Please either bring a packed lunch or use the cafes in the area) 1.30 pm - Hints and Tips - Catherine Taylor- Sheffield Brain storming exercise - please bring any ideas to share. The results will be made into a useful leaflet

2.00 pm - Get to know one another Part 2 2.30 pm - My role at RNHRD as a CRPS Expert Patient Volunteer - Julie Weymouth 3.00 pm - Tea and chat 4.00 pm - CRPS UK update Part 2 - Rebecca Blight - Bristol 4.30 pm - Close

Brambledog 09-09-2013 07:58 AM

I cannot get the email link to work, and am getting the mails returned every time. Could you just re-post the email address please?

Bram.

Brambledog 09-09-2013 08:53 AM

All fine with the second mail link, the first had a C at the start - hence it not working....:rolleyes:

Bram.

Kevscar 09-09-2013 11:45 PM

Kim what party are they Parlimentary Rules state if a member of the ruling party/parties they are required to take up your concerns with the approriate minister.
Perhaps a gentle message suggesting your e-mail may have been mislaid as you cannot imagine them not wanting to be involved in getting help for 480,00 sufferers of the worlds most painful incurable condition, one which they or their family could become victims of from something as simple as a twisted ankle or sprained wrist.


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