The Council of Ministers has formally approved the Rare Disease Plan for 2024–2025. The overarching objective of this initiative is to enhance the quality of life for patients with rare diseases and their families. The plan provides for comprehensive and coordinated healthcare services. The plan also anticipates enhanced access to contemporary medical apparatus and pharmaceuticals, in addition to specialized nutritional supplements for rare diseases. Approximately PLN 100 million has been allocated for this purpose.
It is estimated that between two and three million people in Poland are affected by rare diseases. The solutions proposed in the Plan are based on the following:
- The establishment of additional Expert Centres for Rare Diseases, whose remit will be to provide healthcare services with particular attention to patients with rare diseases;
- Improved access to research used in the diagnosis and treatment of rare diseases;
- Conduct an analysis by 31 December 2024 to complete the list of guaranteed services and to determine the most appropriate method of financing genetic testing;
- Carry out an analysis to determine the most appropriate method of financing highly specialized non-genetic laboratory tests that are used in the diagnosis and monitoring of rare diseases;
- Implement quality control of laboratories that perform large-scale genomic tests used in the genetic diagnosis of rare diseases;
- Enhance access to modern medical equipment and medicines and medicines for special nutritional use in rare diseases; and
- Improve the infrastructure of healthcare providers.
The Rare Diseases Information Platform (https://chorobyrzadkie.gov.pl) was launched in October 2023. It will be updated and supplemented with new information to expand and develop knowledge about rare diseases. A nationwide public awareness campaign will be initiated, and a System for Rare Diseases will be established. This system will collate data to populate the Polish Register of Rare Diseases and the Rare Disease Patient Card, which are integral components of the system for monitoring processes related to medical care and improving the safety of patients with rare diseases.