For a patient advocate is a positive challenge to be involved and work with experts in the ERN. The patients representatives: advice and take care that care is patient-centred and respects patients’ rights and choice, promote and encourage a patient-centric approach in both delivery of clinical care,service improvement and strategic development and decision-making, give advice on transparency in quality of care, safety standards, clinical outcomes and treatment options, ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately, propose methods for feedback and evaluation of patient experience, contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines.