The Federation Council has approved a legislative initiative aimed at providing regions with additional funding for medicines necessary for patients with rare (orphan) diseases.
These amendments, drafted by the Ministry of Health in December 2024 and related to the law «On the Fundamentals of Health Protection of Citizens in the Russian Federation,» stipulate that the federal budget will cover the costs of medicines for patients with orphan diseases. Starting in 2026, federal funding will serve as a safeguard for regions to prevent a shortage of funds for providing medications to such patients.
Currently, the procurement of expensive medications for these patients is funded through three main channels: the state program «14 Nosologies,» the «Krug Dobra» (Circle of Good) foundation, and allocations from regional budgets. The state program, in operation since 2008, covers the majority of these patients. As of late 2024, there were approximately 70,000 patients with orphan diseases in Russia.
