Research Centre for Medical Genetics
1 Moskvorechye St,
Moscow 115522, Russian Federation
Mo-Fr: 9:00 - 17:00

Sergey Kutsev, the Director of the Research Centre for Medical Genetics, Took Part in Gaydar’s Economic Forum XIII

This year's Forum program included a strategic session “Rare rules”. Providing care for orphan patients”.

Regular Gaydar’s Economic Forum took place on the Russian Presidential Academy of National Economy and Public Administration site on the 13th of January, 2022. There were different political authorities, representatives of business, science and the Russian Federation’s healthcare system who have gathered to discuss. Gaydar’s Economic Forum is the regular International scientific and practical conference that considers queries of social and economic development of the Russian Federation. The Forum has been usually held at the Russian Presidential Academy of National Economy and Public Administration in Moscow since 2010.

This year a strategic session, «Rare Rules. Social Security for Patients with Orphan Diseases», was included in the Forum’s agenda. Sergey Kutsev, Director of the Research Centre for Medical Genetics, Chief External Expert in Medical Genetics of the Ministry of Healthcare of the Russian Federation was the session’s moderator. Also, Elena Kartasheva, President of Takeda Russia, Natalya Kolerova, President of Novartis Holding in Russia, Viktor Fisenko, First Deputy-Minister of Healthcare of the Russian Federation, Dmitry Khubezov, Deputy, Chairman of the Healthcare Committee of the State Duma of the Federal Assembly of the Russian Federation have attended the discussion.

Twenty years ago, patients with rare diseases had the incommensurably lower chances to receive effective treatment rather than today. The development of science and manufacturing of medical preparations demonstrates considerable growth: many innovative medications access the market, diagnostics significantly improves, and doctors and patients’ general awareness grows every year. That could be obviously seen in patients with orphan diseases. The quality of life for many of them has significantly improved nowadays.

We should record many successes in Russia: the Charity fund, «The Circle of Well», has been established to support children with complicated and life-threatening conditions. There are plans to expand the neonatal screening programme from 5 to 36 nosologies. The Federal budget of the Russian Federation will bear all the related expenses as the ongoing transfer finishes. At the same time, some patients still do not receive modern and effective treatment due to the lack of correct diagnostics and the high cost of therapy. The absence of timely treatment can lead to the disability of such patients and reduce the able-bodied population.

The activities to improve the efficiency of the social security system for patients with orphan diseases as well as early diagnostics of rare diseases were discussed.