RareConnect Webinar 3 on new patient information sheets on Kallmann syndrome

Take the survey on the patient education materials: http://www.surveygizmo.com/s3/3042213...

Join the Kallmann syndrome community:
https://www.rareconnect.org/en/commun...

About the webinar:

Andrew Dwyer is a leading PhD researcher and clinical specialist nurse working at CHUV, Switzerland and has published many papers on KS / CHH working with clinicians in Switzerland, USA and the UK.

A special area of interest for Andrew is allowing patients to access information on their condition which can help them make their own decisions and have discussions with their health care professionals.

With rare conditions such as Kallmann syndrome / CHH there is often a lack of good quality, up to date information that both patients and clinicians can access.

Part of Andrew's plan is to develop a range of web based tools to allow patients and clinicians to be able to access information from experienced clinicians and patient advocates.

The patient information sheets released recently are part of this process and are a result of a collaboration from KS experts from all over Europe. The sheets are a concise and easy to ready source of information for the basic points of Kallmann syndrome and CHH and are designed to help newly diagnosed patients become more aware of their condition.