About the associationOn April 15, 2014, the Verkhovna Rada of Ukraine passed the Law of Ukraine “On Amendments to the Fundamentals of Ukrainian Legislation on Health Care to Ensure the Prevention and Treatment of Rare (Orphan) Diseases” with 260 votes (registration No. 2461). The initiative was led by the parliamentary group “Sovereign European Ukraine,” particularly by Vladimir Dudka, a member of the parliamentary Health Committee.
Vladimir Dudka explained that the law establishes a roadmap for providing patients with orphan diseases access to necessary medicines and special nutrition for a full life. The roadmap involves several stages, starting with the creation of a register of orphan diseases, which was previously absent in Ukraine. Subsequent steps include establishing a registry of individuals with these diseases, approving treatment protocols, and determining the required funding to meet the needs of these patients. The law ensures lifelong provision of treatment and nutrition for individuals with orphan diseases.
Orphan (rare) diseases, affecting 1 in 2000 people, are severe chronic conditions often leading to a reduced life expectancy or disability. Approximately 80% of these diseases are incurable genetic disorders. Early diagnosis and timely supportive therapy play a crucial role in improving the quality of life for individuals with orphan diseases, allowing them to become active members of society.