Sticky Blood-Hughes Syndrome Support
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National Patients' Day

You are invited to our national Patients' Day being held on the afternoon of Wednesday 15th May 2013 at St Thomas' Hospital London.

The programme includes speakers Beverley Hunt, Anisur Rahman and Graham Hughes. There will be updates on the best treatment, latest research, health insurance and self-testing along with the popular audience questions and answers session AND you also get to meet other patients :)

The cost is only £20 for HSF members - there were over 150 attendees last year so please do book early to avoid disappointment.

hughes-syndrome.org/events....

9 Replies
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Thanks for posting Kate. I would love to be at the patients day but it clashes with work commitments that I can't get out of this year.

Will there be a transcript and/or audio recording available as last year?

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Depends on whether I can get a grant again. The You Tube clip was popular last year but, although a lot of people said they wanted the transcript, only about 20 orders came in so I will only focus on getting the recording done this year.

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Thats a shame about the transcript. Funding wise what would you need to raise for the transcript? Could we do a specific fund raiser for it?

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any way we can have a virtual view of the conference?

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as much as I would love to fly to the UK - not sure the budget would get me there for a few hour seminar on Hughes... not that its not worth it...

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It costs around £1000 to get the tape transcribed and printed; however, this depends on whether we can get the audio file from the recording. But thanks for the thought :)

Skylark - I am the only person at the charity so simply don't have the resources to do this. I am on 'holiday' now but still working in between moving house! I shall be so glad when the website is finished ... BTW I was talking to another patient from the US who was thinking of making the journey, but she has family in the UK so that will cut down the costs. Hopefully I will be able to do the YouTube audio link again -fingers crossed ...

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Hi, I wish to attend the Patients Day and want to book my place, but I cannot access the part of the site where you do the booking. Getting a message saying that the page may have been moved?? Can anybody tell me how to get to the booking. Really don't want to miss out on a place

Thanks Blue Butterfly

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email Kate directly at HSF her email kate.hindle@hughes-syndrome.org

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Thank you. I have sent an email now. It is so frustrating when things don't work that should. Hoping for a positive answer soon.

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