Croatia adopts National Programme for Rare Diseases
The Croatian National Programme for Rare Diseases, which was in the works since 2010, has been approved by the Croatian government in February 2015. In 2008, the Croatian Medical Association founded Croatian Society for Rare Diseases in order to promote awareness of rare diseases (RD) and improve medical practice, diagnosis and treatment of these disorders. At the initiative of Croatian Society for Rare Diseases, in line with EU recommendations, the Ministry of Health of the Republic of Croatian decided to systematically address concerns of RD patients by creating a comprehensive framework that would ensure inclusive protection as well as access to all rights.
Based on the decision of the Minister of Health on 24 May 2010, a Commission of the Ministry of Health for the development and monitoring of the implementation of the National Programme for Rare Diseases advisory was entrusted with the task of producing a National Programme for Rare Disease. This programme would sum up the problem of rare diseases from the perspective of the European Community and the Republic of Croatia and bring the main strategic goals and measures to improve health care in the field of RD in the period ascribed. The composition of the Commission reflects active dialogue in this area, which was comprised of 11 members, 3 representatives of the member associations of patients with RD, and 8 representatives of the state administration and the medical profession.The Croatian National Programme for Rare Diseases represents nine strategic areas of activity to be fulfilled during the period of 2014-2019.
• Improving knowledge and access to information on RD in Croatia
• Support the development of registers of RD and their permanent financing
• Supporting the development of the network of reference centres and centres of excellence for RD
• Improving the availability and quality of health care (diagnosis, treatment and prevention)
• Ensuring the availability of drugs for RD
• Expansion of social rights of people affected by RD
• Empowering patient organisation
• Promoting scientific research in the field of RD
• International networking and cooperation in the field of RD
The National Programme for Rare Diseases 2014-2019 document has been produced by the Croatian Ministry of Health which presents the series of goals and recommendations to contribute to the improvement of quality health care in the field of rare diseases with the rational use of resources. The document is based on the available information and scientific achievements in the area as well as the clinical expertise and ethical principles that ensures equality towards achieving health care for all Croatian citizens.
Read the Croatian National Programme for Rare Diseases