The purpose of this survey is to understand what it is like to live with a rare condition, what kind of support works well or not so well, and what services and support you feel might be helpful. We are keen to identify gaps in the provision of services and areas of good practice. Your responses will help direct priorities in the future work of the Office for Rare Conditions, Glasgow.
When completing the survey you can choose to remain anonymous. The information you and others provide will be shared with patients, families/carers, health care professionals and patient support organisations. If you would like to receive feedback on the information gathered please supply your name and contact details at the end of this survey.
Thank you for your participation.