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Slovenska pediatrija 2012; 19: 126-132

https://doi.org/



Review article

INTRODUCING THE SLOVENIAN NATIONAL HAEMOPHILIA CENTRE

A. Rober
Klinični oddelek za otroško hematologijo in onkologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Abstract

The national centre for the comprehensive treatment of patients with haemophilia consists of 2 units: the haematology outpatient clinics at the Paediatric Clinic in Ljubljana and the Internal Medicine Clinic for patients over 18 years of age. Activities: diagnosis, registration, counselling, supply of concentrates, substitution treatment, genetic counselling, outpatient treatment, hospital treatment, haematological management of procedures, annual examinations, treatment of complications. Within the framework of the Centre for Haemophilia the Slovenian Haemophilia Society (DHS) has many activities: management of the register, documentation of all infusions, education of health workers and volunteers, social service, recreation, programmed bone and muscle assessment, assistance with transportation of handicapped patients, promotion of education, psychological assistance, publishing activity, library, internet. On conrmation of the diagnosis in the laboratory of the Slovenian Centre for Haemophilia and registration in the register of haemophiliacs, each patient receives a special card. In 1980, the haemophilia patients established a society for the entire Republic of Slovenia, which works for the benet of all persons with this chronic disease. The Centre is led by an Executive Committee, consisting of patients or parents of patients. The Scientic Council is composed of the most prominent experts in the eld of haemophilia in Slovenia. This Council plans and passes the doctrine and programmes for the treatment of haemophilia throughout the country. Through the Scientic Council, persons with haemophilia have a direct impact on the level and quality of health care in the country. The Slovenian Haemophilia Society is active in the implementation of programmes for living with the illness and it cooperates closely with the Centre for Haemophilia, which implements a comprehensive medical care.

Key words: haemophilia, management, education.


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