LAW OF UKRAINE

of April 15, 2014 No. 1213-VII

About modification of Bases of the legislation of Ukraine on health care on ensuring prevention and treatment of rare (orphan) diseases

The Verkhovna Rada of Ukraine decides:

I. Introduce in Bases of the legislation of Ukraine on health care (The sheet of the Verkhovna Rada of Ukraine, 1993, No. 4, Art. 19 with subsequent changes) the following changes:

1. To add part one of Article 3 with the paragraph of the following content:

"The rare (orphan) disease - disease which threatens human life or which chronically progresses leads to reducing life expectancy of the citizen or in his disability which prevalence among the population is not more often than 1:2000".

2. Add the Section V with Article 53-1 of the following content:

"Article 53-1. Prevention and treatment of rare (orphan) diseases

The state provides measures for prevention of rare (orphan) diseases and the organization of provision to the citizens having such diseases, the appropriate medical care. For this purpose the central executive body providing forming of state policy in the field of health care:

determines and approves the list of rare (orphan) diseases and provides the official publication of this list;

according to the procedure, established by the Cabinet of Ministers of Ukraine, provides creation and maintaining the state register of the citizens having rare (orphan) diseases;

determines the measures necessary for ensuring prevention of rare (orphan) diseases, and establishes procedure for provision of medical care to the citizens having these diseases.

The citizens having rare (orphan) diseases are uninterruptedly and free of charge provided with medicines and the corresponding products, necessary for treatment of these diseases, for special dietary consumption according to their list and amounts approved by the central executive body providing forming of state policy in the field of health care, according to the procedure, established by the Cabinet of Ministers of Ukraine".

II. Final provisions

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