The Committee on Public Health recommends that Parliament should adopt as a basis the bill on amendments to the Fundamentals of Health Legislation of Ukraine re prevention and treatment of rare (orphan) diseases

Information Department of the Verkhovna Rada of Ukraine Secretariat
23 May 2013, 13:29

 

The bill (Reg. No. 2461) suggests determining the notion of “rare (orphan) disease” on the legislative level and supplementing the current law with the provisions that presuppose a range of legal provisions aimed at prevention and full enforcement of the respective medical aid for persons suffering from these diseases.

According to this document, a rare (orphan) disease is a disease that threatens person’s life or progresses chronically, leads to reduced life expectancy of a citizen or his/her disability, and affects a small percentage of the population (1:2000).