Rare disease - long waiting

Patients with a rare disease have been waiting in the Czech Republic for their medication for an unnecessarily long time. Most physicians encounter diseases that are less than one in two thousand people rarely; not enough attention is paid to them at medical faculties or in specialized education.

There are over seven thousand rare diseases, they have various manifestations, even a few people in the whole Czech Republic have some disease. Thus, it sometimes takes many years for the disease to be diagnosed. Waiting for treatment is also extended by the pricing and reimbursement procedure. Although the consent to release for the market from the European Medicines Agency is also valid for the Czechia, it takes another two years before SÚKL sets the price for these medicines and the reimbursement from the health insurance is approved. Several questions from the Medical Tribune were answered by the Deputy Head of Science and Research of the Oncology Clinic of the 2nd Medical Faculty of Charles University and the Motol University Hospital, MUDr. Kateřina Kopečková, Member of the Committee for Orphan Medicinal Products of the European Medicines Agency (EMA-COMP).

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