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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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08-13-2013, 05:48 AM | #1 | ||
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Guest
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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 |
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09-08-2013, 03:22 AM | #2 | ||
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Guest
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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. |
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09-08-2013, 05:01 AM | #3 | ||
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Guest
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Hopefully if we get another debate in Parliment you can make that, have you e-mailed your Mp did he reply
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09-08-2013, 05:10 AM | #4 | ||
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Guest
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I emailed my MP before the debate but I never got a reply. Not even an acknowledgement.
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09-08-2013, 05:52 AM | #5 | ||
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Junior Member
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Quote:
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09-08-2013, 06:01 AM | #6 | ||
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Guest
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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 |
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"Thanks for this!" says: | Brambledog (09-08-2013), tlm0835 (09-08-2013) |
09-09-2013, 07:58 AM | #7 | ||
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Senior Member
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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.
__________________
CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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09-09-2013, 08:53 AM | #8 | ||
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Senior Member
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All fine with the second mail link, the first had a C at the start - hence it not working....
Bram.
__________________
CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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09-09-2013, 11:45 PM | #9 | ||
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Guest
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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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