Children with rare diseases to receive assistance through ‘Kazakhstan khalkyna’ Fund

«It was decided that the Fund will provide targeted assistance to children with rare (orphan) life-threatening and chronic illnesses,» said the Fund’s Chairman Bolat Zhamishyev.

The project to provide pharmaceuticals to 24 children and two adults with spinal muscular atrophy, Duchenne muscular dystrophy to the tune of KZT9.7bn that the public budget cannot cover is financed by the Fund. Purchase of the Onasemnogene abeparvovec (Zolgensma) medication, which is not registered in Kazakhstan, for four children with spinal muscular atrophy was approved.

According to the Health Ministry of Kazakhstan, over the past 5 years, there has been a 49% rise in patients with orphan diseases, including an 11% rise in children. Pharmaceuticals for orphan diseases accounted for 23% and 26.8% of the total amount of pharmaceuticals provided in 2020 and 2021.