Ministry of Health unveils national strategy for rare diseases

The Ministry of Health on Friday presented the National strategy for rare diseases for 2026–2035, which the government is set to discuss at the end of March. Rare diseases are defined as those affecting fewer than five in 100,000 people; around 6,000 have been identified so far.

Health Minister Adam Vojtěch (ANO) noted that around half a million people in the Czech Republic live with rare diseases. According to Anna Arellanesová of the Czech Association for Rare Diseases, many patients struggle to access specialized care due to limited capacity.

These illnesses are often severe, frequently genetic, and in many cases fatal in childhood, said Pavla Doležalová of the General University Hospital in Prague. Early diagnosis can significantly improve outcomes, which is why genetic testing is a key part of the new strategy. A specialized clinic for undiagnosed children established in 2023 at Brno University Hospital has examined more than 360 patients so far, identifying a diagnosis in 40 percent of cases.