Rare diseases - a growing social problem and a challenge for the system

Public health is usually associated with population diseases, infectious or so-called civilization diseases - but rare diseases, of which some 10,000 have already been identified, already affect 2-3 million Poles, so it is difficult to abstract from them, even if individual diseases are a problem of a very narrow group. 10 thousand, already affect 2-3 million Poles, so it is difficult to abstract from them, even if individual ones are the problem of a very narrow group. During the Public Health Congress, experts considered "where we are and where we are going" in this area.

Looking at the big picture, we are again in a moment of uncertainty. On the one hand, there is the National Plan for Rare Diseases, but, as Stanislaw Maćkowiak, president of the Federation of Polish Patients, said, there is a problem with its full implementation in each area. - There is no dot over the i, therefore both from the point of view of the system and from the point of view of the patient there are no results, he stressed. What's more, there's a problem because the Plan is in effect until the end of the year, and if it is not extended, formally the work on it (which has been going on for many years) will have to start from scratch. Last but not least from the perspective of the patients themselves - the document regulates only the medical area, health-related topics, neither the education dimension nor the issue of social support is included.

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