Lyulin proposed a federal funding mechanism for the treatment of orphan diseases.

      This will reduce the burden on regional budgets. The organization of drug provision for patients with orphan diseases became the main topic of the expert meeting in the Legislative Assembly of the Nizhny Novgorod region. A joint meeting was held by members of the State Duma committees and the regional parliament, overseeing healthcare. This was reported by the press service of the regional parliament. According to the regional Ministry of Health, 405 people with rare diagnoses have been registered in the Nizhny Novgorod region, of which 176 require expensive therapy. The average cost of treating one patient in 2025 reaches 140,000 rubles per month, and within the framework of the "Circle of Good" fund — over 1 million. Assistance for adults is particularly costly — nearly 1.44 million rubles per month. Participants in the meeting agreed that regions cannot bear such a burden alone. A key proposal was a phased redistribution of powers for providing orphan patients from the regional to the federal level. This initiative was supported by the chairman of the Legislative Assembly of the Nizhny Novgorod region, Evgeny Lyulin. He emphasized that issues related to the provision of vital medications are directly linked to the survival of people and cannot depend on the financial capabilities of a particular entity. The speaker of the ZSNO, Evgeny Lyulin, stated that currently the Nizhny Novgorod region is forced to cover these expenses from the regional budget, but in some cases, the treatment of one patient requires up to several million rubles per month. This is lifelong therapy, and not every region is capable of providing it in full on its own. Lyulin added that the regional Legislative Assembly agreed with State Duma experts to prepare a joint position and specific proposals for federal authorities. It is necessary to legally enshrine the Federation's participation in financing such cases. He also noted that the Nizhny Novgorod region has practical experience working with orphan patients, thanks to the regional cystic fibrosis center with isolation boxes and the updated children's regional hospital. Patients with gram-positive and gram-negative flora are treated there. The region accepts patients even from abroad. Thus, patients from Belarus arrive in the Nizhny Novgorod region. This experience, in Evgeny Lyulin's opinion, could be useful for other entities in Russia. As a result, the participants of the meeting decided to prepare a resolution with specific measures for the redistribution of financial responsibility and improvement of the drug provision system.