On March 2, Almazov Centre held a round table themed “Focus on Rare Patients.” The event was organized on the initiative of the Genom Patient Care Centre and timed to coincide with the International Rare Disease Day observed every year on February 28. It aims to raise awareness about rare diseases, the people they affect, their families, doctors, authorities and businesses in order to respond to the challenges faced by a patient with a difficult diagnosis.
The event was attended by V. Krugly, Senator of the Russian Federation Council; V. Vlasova, Deputy of the State Duma Committee on Health Protection; L. Ogul, Deputy of the State Duma of the Russian Federal Assembly; E. Kiselev, Deputy of St. Petersburg Legislative Assembly; A. Tkachenko, Chair of the Board of the Circle of Kindness Foundation to Support Children with Serious, Life-Threatening and Chronic Diseases, Including Rare (Orphan) Diseases.
Healthcare executives, federal experts and heads of leading patient organizations that deal with orphan diseases discussed issues of support for patients with rare diseases, drug provision, measures to assist the state and patient organizations in providing comprehensive and effective care to children with rare diseases.
During the round table, Evgeny Shlyakhto, Director General of Almazov Centre and Academician of the Russian Academy of Sciences, emphasized the importance of creating favorable conditions for the generation of new drugs, ideas and products for the benefit of patients.
“In recent years, the country has really done a lot to ensure that patients with rare diseases receive necessary care. I believe that everyone deserves world-class medical care. And our task is to provide such a level of care in Russia for all patients, including those with rare diseases. Today, there is a synergy between the state and authorities, and the involvement of patient and professional communities is very important. But I would like to emphasize the role of science, because everything that has been happening over the past 20 years in the study of rare, unknown and genetically determined diseases is certainly due to achievements in science, molecular biology and genetics,” the academician said.
In March 2021, Almazov Centre established the first specialized Competence Centre for Rare Diseases in Russia. In addition, on the initiative of Almazov Centre, the Research Centre for Unknown, Rare and Genetically Determined Diseases was organized as part of a World-Class Research Centre.
“The number of patients with rare diseases is increasing every year. This is not due to the increased prevalence, but to the improved detection rate and better methods of treatment and rehabilitation. Having brought together the leading experts in this field at Almazov Centre, we would like to once again emphasize the importance of these developments, accumulate experience and talk about it in the media,” said Elena Khvostikova, Director of the Genom Patient Care Centre.