Rare diseases in the focus of personalized medicine
On July 2-4, 2010, St. Petersburg will host the V Eastern European Conference on Rare Diseases and Orphan Medicines "Rare Diseases in the focus of personalized Medicine" and the All-Russian Conference on Rare Diseases and Rarely Used Medical Technologies "The Road of Life".
Personalized medicine and treatment of rare diseases is a new paradigm of healthcare, which is increasingly developing, both in developed and developing countries. At the heart of this paradigm is a specific disease and an individual patient.
A special feature of the event is the simultaneous participation of all parties interested in the development of this direction: patients, medical and social workers, representatives of state authorities, pharmaceutical manufacturers, non-profit organizations, etc., all who care about the development of domestic healthcare, who are not indifferent to the needs and aspirations of patients.
The development of this direction is an indicator of maturity, modernity, social orientation and innovation of the healthcare system.
It is expected that leading scientists, specialists, practitioners, patients and representatives of patient organizations from Russia, CIS, European countries, representatives of the European Union, CEEGN and EURORDIS European Alliances will take part in the conferences.
We invite you to take part in these events!
We accept your suggestions for the organization!
Chairmen of the Organizing Committee of Conferences:
– Rumyantsev Alexander Grigoryevich, Professor, Director of the Federal Research and Clinical Center of Pediatric Hematology, Oncology and Immunology of Roszdrav,
– Svetlana Karimova, President of the National Association of Organizations of Patients with Rare Diseases "Genetics",
– Alexey Sokolov, Professor, Vice-President for Medical Affairs of the National Association of Organizations of Patients with Rare Diseases "Genetics",
– Rumen Stefanov, Professor, Head of the Bulgarian Association for Promotion of Education and Science,
– Vladimir Tomov, President of the Bulgarian National Alliance of People with Rare Diseases
– Vladislav S. Baranov, Professor, Chief Geneticist of St. Petersburg.
– Pavel I. Shabalkin, SPFO expert on medical and social issues.
Application deadline: May 15, 2010
Organizers: National Association of Organizations of Patients with Rare Diseases "Genetics", Bulgarian Association for Promotion of Education and Science, Bulgarian National Alliance of People with Rare Diseases, Federal Service for Supervision of Healthcare and Social Development, Administration of St. Petersburg, Russian Academy of Medical Sciences, Federal Research and Clinical Center of Pediatric Hematology, Oncology and Immunology of Roszdrav, Russian Research Institute of Hematology and Transfusiology, D.O. Ott Research Institute of Obstetrics and Gynecology of the Russian Academy of Medical Sciences, Medical and Genetic Center of St. Petersburg, Union of Professional Pharmaceutical Organizations, Russian Red Cross, Central and Eastern European Genetic Network, ANO "Resource Human Rights Center"
Contact information:
National Association of Organizations of Patients with Rare Diseases "Genetics"
Legal address: 79 Moskovsky Ave., letter A, room 9N, 196086, Saint Petersburg.
Email: nacgenetic@mail.rufax: +7(812) 275-47-30,
tel.: +7(812) 319-34-23, +7(812) 275-47-30, +7-950-03-21-184 ( Karimova Svetlana Igorevna),
+7-921-573-48-98 (Sokolov Alexey Albertovich),
8-800-555-00-48 – Federal Direct Line for Rare Diseases (toll-free)
The Conference website will start its work on February 20.
Portal "Eternal youth" http://vechnayamolodost.ru17.02.2010