Patient information sheets on Kallmann syndrome and CHH translated into 21 different languages.
Dr Andrew Dwyer is a specialist clinical nurse and research specialist in Kallmann syndrome / CHH based at the CHUV (Lausanne University Hospital in Switzerland). Part of his work was heading a consortium of KS / CHH clinicians and researchers throughout Europe. This has lead to a number of different research projects being funded.
One such project was the development of a comprehensive set of consensus guidelines for the treatment and diagnosis of Kallmann syndrome and CHHwhich is a useful source of information for both patients and clinicians alike.
Another project was the development of patient information sheets that gave a concise but comprehensive overview of the condition so new patients could learn more about their condition and help to explain the condition to other people.
What makes these information sheets more special is that they were created with input from clinicians, researchers and patient advocates which hopefully has enabled them to contain the information that is relevant to patients while still covering as much of the relevant information as possible.
Once the English language version of the information had been finalised the next step was to produce translations into different languages. The translations were carried out by Kallmann syndrome experts within that country. The name of the person translating each version is listed so patients can contact a Kallmann syndrome expert in their own country.
These information sheets are freely available for anybody to share. They will also be available soon on the GnRH deficiency website. It is hoped that this will be the start of a series of patient led information sources that can help patients access information and interact with other patients and ask experienced Kallmann syndrome clinical specialists questions.
