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Patient Information for Kallmann syndrome and CHH.

October 12, 2016

This is the link to the webinar that Andrew Dwyer and myself took part in recently. Andrew was talking about how the patient information sheets were designed and the plans for the future for the availability of patient information on line.

Rare Connect Webinar. Patient Information for Kallmann syndrome.

There is a link to a short survey after reading the information sheets to help Andrew develop ideas for other future projects. It is hoped to develop a range of web based resources for both patients and clinicians to access for information on diagnosis, genetic testing, psychological issues and patient advocate support.
The sheets are in English at the moment but have been translated into 17 different languages and will be posted on line in November for anybody to access at anytime. The sheets that are in different languages will have the contact details of the KS medical expert that approved the translation and who can be contacted for further information if required.
It would be useful to get as many responses to the survey as possible to help assess how useful these information sheets are and to find ways of improving them in future.
These patient information sheets have been written by after discussions with both patients and medical experts in order to try to provide a useful tool for patients.

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