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Scientific and practical medical conferences go online only - the first ORPHANICA Conference of the Association of Medical Geneticists gathered more than 5,000 spectators

MOSCOW, March 26 - More than 5,000 doctors, scientists and healthcare professionals took part in the ORPHANICA Russian Multimedia Conference, the first of a new series of conferences of the Association of Medical Geneticists dedicated to diagnosis and treatment of orphan diseases. The Conference, held entirely online, brought together geneticists, neurologists and ophthalmologists at one platform.

The first Russian multimedia conference ORPHANICA, organized by the Association of Medical Geneticists (AMG) jointly with the Society for the Medical and Health Care Development (ORMiZ), was held in Moscow on March 25, 2020 at the platform of the MIA Russia Today International Multimedia Press Center.

Due to the epidemic situation and the restrictions imposed by federal and regional authorities on events, the ORPHANICA conference was held entirely online without any in-person participants. The total number of spectators exceeded 5,000 people. Experts from all over Russia - from Kaliningrad to Vladivostok - took part in the Conference. The core audience consisted of pediatric and adult neurologists, ophthalmologists and medical geneticists, as well as pediatricians, neonatologists, healthcare professionals and representatives of federal and regional healthcare authorities.

“I am very happy that despite a heavy workload of medical staff, several thousand of our colleagues took the time to take part in ORPHANICA conference. A specific feature of our event is a multidisciplinary approach. Today, we have combined the efforts of leading geneticists, neurologists and ophthalmologists; next, we are going to hold such conferences with participation of pediatric and adult rheumatologists, orthopedists, cardiologists and many other specialists. Using modern technologies, the colleagues from even the most remote regions of our country are able to participate in the ORPHANICA conference”, said Sergey Ivanovich KUTSEV, Corresponding Member of RAS, the ORPHANICA Conference Chairman, President of the Association of Medical Geneticists, Chief external expert in medical genetics of the Russian Ministry of Health, Director of Bochkov Research Centre for Medical Genetics.

A plenary meeting was held during the conference, prepared by such well-known experts as Valentina Ivanovna GUZEVA, the Chief external expert in children’s neurology in the Ministry of Health of Russia, Alla Borisovna GEHT, Director of the Moscow Department of Health Z.P. Soloviev Federal Scientific and Practical Psychoneurological Center, and Lyudmila Anatolyevna KATARGINA, Chief external expert in children’s ophthalmology in the Ministry of Health of Russia. The focus of the plenary session was orphan alertness in neurologist and ophthalmologist practice. Experts agreed that theoretical training of specialists was the key to success in the ultra-rare diseases diagnosis.

 “Each practitioner should know a set of symptoms supposing a genetic pathology and requiring an appropriate examination - this will allow a correct and, most importantly, timely diagnosis and treatment, because many orphan diseases are more or less treatable. Even if you have failed ever to meet such a patient in your entire practice, you will be sure that you certainly did not “miss” him; and if you meet such patient, you will be ready to act properly and in a timely manner”, Valentina Ivanovna GUZEVA, the Chief external expert in children’s neurology in the Ministry of Health of Russia, noted in her welcoming speech.

Based on the results of the plenary session and other sections of ORPHANICA conference, the experts will prepare a resolution establishing basic principles of orphan alertness and give recommendations to neurologists and ophthalmologists for orphan diseases diagnosing.