Prague, Feb 24 (CTK) – Specialised centres for the treatment of rare diseases that afflict fewer than five in 10,000 people will be established in the Czech Republic within several months, the Association for Rare Diseases (CAVO) says in a press release on the occasion of the Rare Disease Day on February 28.
Tens of thousands of people suffer from these diseases in the country.
Patients’ organisations have bees striving for the centres to treat rare diseases since 2010, CAVO said.
The system of centres to facilitate the financing and organising of the rare disease care should be set up within five months, Deputy Health Minister Roman Prymula said at a meeting of the patients’ organisations in January.
“Exactly comprehensive care in specialised centres plays an important role for us. Doctors in common surgeries do not have enough experience with rare diseases, which naturally affects the quality of care and on-time diagnosing,” CAVO chairwoman Anna Arellanesova said.
Similar to some existing clinics, the new centres would be integrated into the European referential networks that make it easier to gain experience from abroad.
“Doctors can, for instance, enter a particular case into the system and call an international team for consultations,” CAVO deputy head Rene Brectan said.
The new system will also facilitate sending patients abroad for treatment. This is, however, problematic as Czech health insurers cover the treatment only up to the level usual in the Czech Republic. However, as the treatment of some rare diseases is not available in the country, its price is not set.
This is why the patients called on the Health Ministry to deal with the problem.
There are some 7,000 described rare diseases. Dozens up to hundreds of people suffer from such a disease. Most of the patients are not diagnosed at all.
The number of patients with rare diseases is put at 20,000 to 800,000, while children make up three-quarters of them, in the Czech Republic with a population of 10.5 million
They have a low chance of being cured as there are no efficient medicines for 95 percent of rare diseases. Hundreds of medicines are being developed, but patients complain that it may last several years until they are available in the Czech Republic.
Those diseases are most often congenital developmental defects, hereditary metabolic disorders and rare tumours. Most of them are of genetic origin.
They develop before the birth and three-quarters are manifested in childhood. Some 30 percent of patients die before they turn five years.
The Czech Republic introduced a screening of newborn babies to detect congenital defects in 2009. It is able to diagnose 13 of the 45 distinguishable diseases from a drop of blood. Both the screening and treatment are covered from health insurance.
The screening is part of the national strategy for rare diseases in 2010-2020 with the aim to make both their diagnostics and treatment more efficient.
