Sticky Blood-Hughes Syndrome Support

YouTube recording and transcript available from the HSF Patients' Day 16 May 2012

Thanks to everyone who attended our recent annual Patients’ Day event at St Thomas’ Hospital - however, we do realise it is not possible for everyone to make the journey or find the time to attend so this year, thanks to grant funding, we have been able to make a recording of the event which is available to listen to for free on You Tube

and you can also buy a copy of the full transcript for £5.00 plus P&P from our website:

hughes-syndrome.org/shop.htm

16 Replies
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Well done with the quality of this! Very good, really good to have this as material!

Mary F x

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Cheers MF :) The transcripts are rather posh too and are being bound as we speak!

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Brill....I will get around to my little slide show & video I made too soon, just a little poorly at mo' but I'll be ok, this is really good to have xx

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Hope you feel better soon xx

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This is brilliant material! Will definitely be ordering transcript and waving it under a few doctors noses!!!

Thank you so much Kate

Gentle hugs xxxxx :-) :-) :-)

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Hi kate,

This is great brilliant idea and like shena will be buying a copy of transcript, wanted to ask you happy for me to put a link to the rest of the photos that the photogrpoher

paddy

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Thanks Paddy - I don't have a problem with a link going to the photographs :)

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Fantastic. Thanks for arranging Kate.

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I have already emailed this to my old GP practice in London, the one I use locally and my children's paediatrician! Information sharing at it's best!

Mary FB

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excellent as 1 battling get diagnosed runs in ladies in my family,ive purchased this.will share to benefit others. so grateful for special people such as Professor Hughes.

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Thanks Kate,

I am sorry to have missed it as I think it was the best yet and lots of new information.

So upset I wasn't there to comment on the chap from the insurance company. What was his company called? Grim Reapers Insurance PLC!

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Excellent well done Kate you are a star ;-)

i cant wait for next years - i got the bug and hope to make a mini holiday around it thank you for all your hard work

kathy xx

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Thanks chaps :) This feedback makes it all worthwhile! The transcripts are now available and look very gorgeous - had them copied and bound so they should last longer.

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I've just received my transcript in the post. Well done and a big thank you to Kate. It's very stylish and looks very posh and professional with its clear cover. I'm really pleased with mine and have just retired to bed early to read it (I had a Total Knee Replacement 3 weeks ago and am in a bit of pain and not feeling too well today as my INR has gone up to 5.6! - that's why I've gone to bed early)

Suzanne xx

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Hi Kate fantastic stuff, who do I contact to pay for a transcript Many thanks

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Cheers Suzanne - hope that knee continues to get better - it's been a long old journey hasn't it?!

Traceylou - please order a copy from our website: hughes-syndrome.org - that's the simplest way :)

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