University Medical Centre Ljubljana

AREA OF EXPERTISE AND HEALTHCARE PROVIDER’S CONTRIBUTION TO CARE FOR PATIENTS WITHIN THE METABERN NETWORK

University Children’s Hospital Ljubljana (UCHL) as a part of University Medical Centre Ljubljana (UMCL) is the central national paediatric hospital with a tertiary and quaternary health care. UCHL (https://www.kclj.si/index.php?dir=/pacienti_in_obiskovalci/klinike_in_oddelki/pediatricna_klinika) represents the national educational base for the paediatrics in Slovenia and is one of the 17 care clinics/institutes in the UMCL with 2166 patient beds (https://www.kclj.si/index.php?dir=/about_us). UMCL has a principal aim to provide quality care to patients from Slovenia in all health care areas for the paediatric and adult patients and it has obtained the international accreditations.

UCML’s 1212 physicians pursue a triple mission of health care, education and research. UCML is the only hospital in Slovenia providing specialized care for some diseases, including the rare diseases with particular interest in genetic inherited disorders like inborn errors of metabolism and primary immune deficiencies, which are managed at UCHL. A transition program to help the patients affected by rare diseases from paediatric to adulthood care is available.
Activities of the UMCL and UCHL include:

• Health care services with the diagnostic and management facilities for inpatients,
• Specialist services and other health care activities for outpatients
• Education, research and experimental development in medicine and natural sciences,
• Pharmacy services and wholesale trade in pharmaceutical products, including the orphan drugs,
• The multidisciplinary expertise for the rare diseases, including genetic counselling,
• The habilitation and rehabilitation of children, adolescents and adults with different developmental disorders, consequences of injuries or diseases on their locomotor and nervous systems with prevailing motor impairments,
• Other activities needed to support the UMCL’s basic functions.

UCHL is a patient-centered HCP with the practice of caring for the patients in the ways that are meaningful and valuable to the individual patients and their families. UCHL encourage patients and the family/parents in decision-making, recognizing the importance of the care that is respectful of, and responsive to, individual patient preferences, needs and values. The information regarding access to clinical, social, physical and financial support are available. The inclusion of the psychologist and the social worker in the management of the patients is the part of the integrated medical care at UCHL.
National Contact Point for Rare Diseases is an additional activity of UCHL (http://www.redkebolezni.si/en/national-contact-point-for-rare-diseases/). The contact point has a daily info telephone and e-mail access with the personal counselling to the patients, who have a diagnosis of a rare disease, including the inborn errors of metabolism.