Czech government outlines new strategy for rare diseases

2010-06-28

The Czech Prime Minister, Jan Fischer, has announced the details of the new 2010-2020 National Strategy for Rare Diseases, which aims to provide the correct diagnosis and treatment for all patients suffering from so-called rare diseases and to centralise patient care at 10-20 centres. The strategy document outlines better diagnostic and treatment methods, R&D and educational measures, support for maternity screening and patient organisations, and the establishment of a new multi-faceted working group. A new National Co-ordination Centre for Rare Diseases will also be established at the Motol Faculty Hospital in Prague.
Around 20,000 people suffer from rare diseases in the Czech Republic. These are illnesses which strike fewer than five in 10,000 people. In total there are more than 8,000 different diseases, including congenital duct obstructions, inherited metabolism malfunctions and rare tumours – 80% of these illnesses are genetic in origin, and one-third of patients die before the age of five. At present, newly born babies in the Czech Republic are tested for 13 of the 45 diagnosable rare illnesses.
Treatment of rare diseases is very costly: insurance companies pay up to CZK 30m (€1.2m) every year per single patient for enzyme treatment. Of 62 pharmaceuticals for the treatment of rare diseases registered in the European Union, there are 27 distributed in the Czech Republic.