Hughes syndrome videos and Patients' Day

Hi All

For those of you who don't know, we do have a Facebook page: facebook.com/pages/Hughes-S... and I have finally worked out how to add in the You Tube app so you can now view the three videos there now - phew!

There is a possibility of more videos arriving in the next few months as a health journalist is hoping to do some filming at the Patients' Day tomorrow.

Also, for those of you who can't make it to the event tomorrow - fear not, GSK and Sanofi Aventis have given us £5K funding so I have arranged for a sound technician to make a recording. This should be available to listen to on either our website or FB page, and there will be a typed transcript available too for a small fee.

Looking forward to seeing some of you tomorrow - it's going to be v v busy with over 120 patients, 20 or so guests (including doctors, journalists, photographer etc) and of course, the seven speakers. You can access the programme here: hughes-syndrome.org/events....

Thankfully my lovely husband is coming up to help me as I still can't lift anything due to the neck/spine problem! And the Day wouldn't take place without the trusty HSF volunteers - massive thank you to Beth, Yvonne, Hannah, Carol and Mary FB.

Kate :)

3 Replies

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  • Thanks for this Kate and a big thank you to all your team for organising the much needed event! I look forward to listening to the recording and/or reading a transcript (very happy to pay small fee for this as it is good to mull it over for a while).

    You mention elsewhere that you will selling new titles on Hughes....could you list them here at all and how to go about buying them if you don't attend? Thanks...appreciate you must be chasing your tail today....good luck and thanks again.

    Ex

  • Hi E

    Slight confusion - the videos are not for sale but have been produced for free - one is by a professional (thanks Dan - he produces Coach Trip too!) and the other are by students. You can view them on the FB page. :)

  • Fantastic Kate. Thanks for sorting the recording for those of us who can't make it on the day.

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