International day of patients with rare diseases is marked today

Rare or orphan illnesses are considered the diseases which are found in little number of people. As a rule, these diseases are genetically caused.
 “Tatarstan registers such patients” – has reported the deputy minister of TR Health Ministry Farida Jarkaeva to the correspondent of news agency "Tatars-inform". 468 persons are included in this register (more than half from them are children) with 18 rare illnesses, for example idiopathic thrombocytopenic purpura (Evans's syndrome), disturbance of exchange of aromatic amino acids, copper, aplastic anemia, youthful arthritis, etc.
Not all patients of Tatarstan with rare diseases need treatment. Only 200 patients need medicines therapy. Preparations for treatment of such diseases are expensive. The price for one package can exceed 1 million roubles. Purchasing of medicines for this category of patients lays down serious burden not only on them, but also on Health Ministry.
«These medicines are not included into the list of vital and major medicinal preparations and the price on them is not regulated», - has explained Farida Jarkaeva.
At present this category of patients is provided with necessary medicines at the expense of program of Provision of Necessary Medicines (PNC), regional privileges and at the expense of the means provided on treatment of orphan diseases. Sometimes charity funds give means for these purposes. This year 210 million roubles are provided for acquision of medicines for the patients with orphan diseases.