The aim of this survey is to gain the views and experiences of people living with rare endocrine disorders about the research they think should be prioritized related to their disease within European countries. This initiative is taken in order to provide a better understanding of patient needs and challenges in this area.
This questionnaire is suitable only for adults aged 18 years and over. A parent or carer should complete this questionnaire on behalf of anyone under the age of 18. Please complete only one questionnaire per person. This survey should take no more than 5 minutes to complete.
This research is being conducted by the working group Research and Science of the European Reference Network on rare endocrine conditions. (Endo-ERN).
European Reference Networks (ERNs) are virtual networks involving Reference Centres across Europe. They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources.