Quality of Care & Patient View (WP4)
An inventory and validation will be done of current standards and options in patient care, by building on existing EU initiatives, pations organisations, national coordinators and Eurordis. Member-specific aspects will be taken into account, such as cultural differences, aspects of age, learning difficulties, to ensure outcome-measures that fit all or specific groups. The ultimate aim is to make all existing information available through a single, easy-to-use platform.
Within these operational activiteis we aim to provide excellent care for patients with rare or complex endocrine conditions improving time to diagnosis and correct treatment, as well as pshychological support for patients and families, and prophylactically anticipate the chronic specific co-morbidities of many of these conditions, harmonising care across Reference Centers to improve equality throughout the EU.