La Parc Taulí Rare Diseases Unit It was created to coordinate and optimize functional units dedicated to rare diseases, concentrating resources and knowledge to improve healthcare quality, results and research.
Its structure includes the Operational Committee, the Liaison Office and the set of Care Units (UECs).
The care model prioritizes an integrated and multidisciplinary network, guaranteeing equity of access and the active participation of patients.
This approach allows to maximize efficiency and consolidate the Parc Taulí as a reference center, thanks to patient-centered care, innovation and leadership in specialized services.
What is a Clinical Expertise Unit (UEC) in MM and what is the UEC Network (XUEC))?
The Clinical Expertise Units in MM are functional units integrated by hospitals in the health system of Catalonia with experience and knowledge in the care of MM designated by CatSalut. Its main function is to make the clinical diagnosis and the care plan of the person with a minority disease, which includes the therapeutic strategy and the follow-up strategy of the person affected by MM.
CatSalut has defined a UEC designation system (designation procedure) for each of the thematic groups of MM, following the grouping of the MM carried out by the European Commission (https://health.ec.europa.eu/european-reference-networks/networks_en).
For each MM Group more than one UEC can be designated constituting a Network of UECs that act as leaders for the network of health services for a certain thematic group of MM and facilitate the knowledge transfer process, of research and innovation and of accessibility to clinical protocols in regional reference hospitals and professionals in the specialized and primary care network.
Where is the care provided??
This care is provided from two levels of care:
- The territorial or community reference team at home, which includes the primary care team, the specialized care of the hospital and the reference specialist centers of the territory, the social action services and the educational services.
- The highly specialized teams of hospitals, which are organized into networks of clinical expertise units (XUEC).
These two levels of care work together, and their coordination is the responsibility of hospital case managers, who also attend to and support affected people and their families.
The XUECs are clinical services formed by a multidisciplinary team of professionals with a high level of knowledge and expertise. Each of these XUECs is specialized in a thematic group of diseases.
For any type of information or management related to minority diseases you can always contact theLiaison Office