2nd National Action Plan For Rare Diseases of the 10 year Czech National strategy
A ten-year Czech National Strategy for Rare Diseases was approved by the Czech government in 2010 for the country's rare disease patients, estimated to be roughly 20,000 out of 10.5 million habitants. The Czech strategy outlines existing efforts and proposes major targets and measures for improving the situation in the Czech Republic, to be subsequently specified in more detail in the context of a three-year national action plan that establishes sub-tasks, instruments, responsibilities, dates and indicators for fulfilling individual tasks.
In the National Action Plan for Rare Diseases for the period 2015-2017 (NAP2) emphasis is especially placed on the support of early identification and diagnosis, on the further centralisation of care for rare disease patients, the unification and development of data collection and the creation of standards of care for patients with rare diseases, as well as on the improvement of awareness and education in rare diseases on continuity with the already established foreign cooperation and on establishing new contacts, and on the connecting Czech rare disease centres with common European databases and registers aggregating clinical and laboratory data. An emphasis is also placed towards joining international rare disease research projects (such as E-rare2 and/or Horizon 2020 funding schemes), domestic research projects as part of the Agency for Healthcare Research and the development of cross-border diagnostic and medical care in accordance with the provisions of the Directive on Patients' Rights in Cross-Border Care, which was transposed into Czech legislation in 2014.
The strategy also includes plans for the establishment of centres for home care, social subsidised hospital beds, respite centres and rehabilitation facilities, and the expansion of long-term care beds with trained personnel and special equipment to improve the quality of life and social inclusion of rare disease patients. The strategy also asks for attention to be placed toward effective and timely pharmacotherapy of rare disease following internationally-accepted standards and recommended approaches, and increasing the education and awareness on RD issues among the medical professionals and the public at large.
Read the 2nd Czech National Action Plan