Sergey Voronin, Chief Physician of RCMG, Stressed the Need to Create the Centre of Orphan Diseases in Voronezh
On February 10, the Voronezh Regional Duma held a regular regional meeting of the Project to improve cooperation among participants in providing medical assistance to children with rare and severe diseases. Sergey Voronin, chief physician of the Research Centre for Medical Genetics, said that centres of orphan diseases are needed in each region.
The participants of the meeting were Archpriest Alexander Tkachenko, Chairman of the Board of the Charity Fund «The Circle of Well», employees of the Department of Healthcare of Voronezhskaya Oblast – Margarita Kinshina, head of the Department of medical and preventive care for mothers and children, Tatiana Fedotova, chief external expert in medical genetics of the region, Ekaterina Belova, deputy chief physician «VRCHC 1», Roman Mironov, the member of the expert council of the State Duma Committee on rare diseases. The organizers of the Project and moderators of the meeting are Anastasia Tatarnikova, Chairman of the Board of ANCO «The House of Rarities», and Elena Balabanova, head of ANCO «The Society of Patients with Phenylketonuria».
“The centres of orphan diseases are needed in every region of Russia, including Voronezh. Patients with hereditary diseases now have to be treated in different places by specialists who often lack clinical experience in dealing with them. The establishment of the Orphan Disease Centres will not require additional financial costs for the regions, only organizational arrangements are needed to allow the fragmented provision of care into a single system. Centres may be established on the basis of existing multidisciplinary facilities. Medical and genetic consultations and specialized specialists such as neurologists, cardiologists, ophthalmologists and others should be involved in the treatment of orphan patients. This multidisciplinary approach will improve the diagnostics, treatment and rehabilitation of patients with hereditary diseases. The problem of orphan patients is extremely urgent: the total number of such patients in each region can reach up to 1% of the population”, - said Sergey Voronin.
A project to improve the interaction of participants in the provision of medical assistance to children with rare and severe diseases and to increase medication availability was launched in autumn of 2022 in the Chechen Republic. Voronezh became the second region where the meeting was held.
Key Project Participants:
- State Fund for Assistance to Russian Children with Severe and Rare Diseases «The Circle of Well»
- Research Centre for Medical Genetics
- Russian Association of Medical Geneticists
- Regional healthcare authorities
- community and patient organizations
The participants of the meeting in Voronezh analyzed the effectiveness of the current work in the interests of seriously ill children, made proposals to improve the quality of medical assistance to patients with orphan pathology in Voronezhskaya Oblast and improve cooperation with the Charity Fund «The Circle of Well».