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Photograph: Photo by Ilmicrofono Oggiono, used under CC BY

Last year, the government earmarked HRK 360 million (approximately 47 million euros) for the establishment of a register of Croatians diagnosed with rare diseases and for improving the provision of the necessary medicaments for the treatment of those diseases as well as for the social inclusion of such patients, however, little has been done so far, it was said on Friday, at the start of a two-day conference on rare diseases in Zagreb.

Rare diseases are considered to be those that affect fewer than five people per 10,000 inhabitants. About 250,000-300,000 people in Croatia are estimated to be suffering from such diseases. They often appear in childhood because in most cases they are genetically determined, and they put a heavy burden on the patient and their family because of problems in diagnosing such diseases and in seeking adequate therapy.

The 2015-2020 national programme for rare diseases was adopted a year ago, but it has not yet taken hold, participants in the conference said, urging the new government to ensure more funds for the treatment of rare diseases and for help to patients suffering from those problems.

In Europe, some 36 million people are estimated to be affected by a rare disease.

2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day. 

On 29 February, people living with a rare disease, patient organisations, politicians, carers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases under the slogan: "Join us in making the voice of rare diseases heard," it is stated on the website  of the EURORDIS, a non-governmental patient-driven alliance of patient organisations representing 705 rare disease patient organisations in 63 countries.

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