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Ideas for new KS / HH information website.

April 9, 2012

Andrew Dwyer is a specialised endocrinology nurse and KS clinical researcher. He used to work with the Boston team under Dr Crowley but has since moved to the new KS / HH research centre set up by Prof. Nelly Pitteloud at the University Hospital Vaudois & University of Lausanne in Switzerland (CHUV).

As part of a EU funded research grant he is setting up a multinational website and resource centre for KS / HH. The plan is to have a centralised database and website for all KS / HH information.

It will contain:

Current research projects & papers

Clinical guidelines for diagnosis & treatment

List of KS / HH experts for each geographical area

Patient area

Andrew is looking for input and ideas on what to have in the patient area. It is clear that the best people to ask are the patients themselves so he is asking anybody who is interested to e-mail him with any ideas or suggestions on what they would like to see on this website. The website has to be useful to both clinicians and patients alike so he needs as much input from patients as possible.

Already ideas include, message boards, videos, FAQ, survey questions, patient stories, different language formats.  Andrew would be pleased to hear from anybody with any suggestions or comments on this proposal.

His e-mail address is:   andrew.dwyer@chuv.ch

We have already posted a message on the three KS / HH Facebook groups and the Yahoo forum and anybody who has an interest in this project is invited to contact Andrew.

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