Some European countries have physically established expert structures (Centres of Expertise) for the diagnosis, management and care of patients living with rare diseases at a national level. Specialising in a single rare disease or a group of rare diseases, these centres of expertise bring together a group of multidisciplinary, specialised competencies in order to provide high quality patient care.
The European Organisation for Rare Diseases (EURORDIS) is a patient-driven alliance with over 447 patient groups in 44 countries in Europe and beyond. EURORDIS aims to build consensus on public health policies for rare diseases at a European level in order to improve patient care throughout Europe by gathering experiences and expectations of patients and professionals from centres of expertise across Europe. For this purpose we aim to carry out a Delphi study which will involve this survey and a face-to-face meeting with patients and health care professionals.
The study is part of the larger EURORDIS project, POLKA, supported by the EU Health Programme. Final recommendations on Centres of Expertise, based on study findings, will be communicated with the European Commission Committee of Experts on Rare Diseases and broadly disseminated with stakeholders in the European rare disease community.