The H-CARE Pilot Survey, the new Rare Barometer survey designed to provide a detailed understanding of patients’ experiences of healthcare, is now live! The long term goal of the H-CARE Survey is to develop a centralised patient feedback mechanism across the 8000+ rare and complex diseases, and across the 24 European Reference Networks (ERNs). In particular, this is a joint initiative alongside four ERNs (ERKNet, ERN GENTURIS, ERN-LUNG and eUROGEN). The aim is to use this pilot survey to test the development of a common patient feedback mechanism across Europe, and across rare and complex diseases. The long-term goal is to scale up the survey to cover all 24 ERNs and to measure evolution of care over time.
EURORDIS has created a toolkit (available in 23 languages) which includes suggested content for your emails or other social media posts to help you.