PhD, Doctor of Science, Professor of Medical Genetics, Head of Laboratory of Molecular Genetics of the Brain at Mental Health Research Center, Managing/Section Editor of Molecular Cytogenetics (BioMedCentral-Springer) Editor-in-Chief of Journal of Neurology and Epidemiology.
About the Event: Solemn presentation of national public award in the field of rare diseases "Blue Bird" for 2015.
Organizer: MRBOOI "Union of patients and patient organizations on rare diseases." Winner of the "Blue Bird" are annually: Experts on Rare Diseases, scientists, leaders of public organizations, representatives of legislative and executive authorities who have made their contribution to the care of patients with rare diseases in Russia.
Blue Bird, a character known fairy tale in Russia has become a symbol of hope and faith for patients with rare diseases. Rare diseases, because of the low prevalence of particular diseases are little known even among the medical community. Faced with a rare diagnosis, and patients and doctors-experts see the lack of awareness, lack of specialized medical care system, lack or high cost of medicines. Just like the heroes of the famous fairy tale, patients with a rare disease for many years waiting for a correct diagnosis, looking for a competent doctor and hoping to get the coveted medicine.
The award "Blue Bird" was founded public organization "Union of patients and patient organizations on rare diseases" in 2010 and is a public recognition of the achievements in the field of helping people with rare diseases and to improve awareness of rare diseases, the medical community awareness. Award winners in previous years were well-known politicians, public health officials, medical experts in the field of rare diseases.
The award will be attended by representatives of the social movements of patients and professional healthcare associations.
For more information visit the award and official resources MRBOOI "Union of patients and patient organizations on rare diseases»: www.fundbluebird.ru | www.spiporz.ru | www.redkiyden.rf PS: Rare diseases occur with a frequency of 1 in 10,000 people. It is currently known about the more than 7,000 rare diseases. According to statistics, every tenth man in the world could suffer one of their rare diseases. About 50% of patients with rare diseases - are children.
MRBOOI "Union of patients and patient organizations on rare diseases" was created in 2010 to bring together the efforts of individual patients, physicians and public associations in the care for patients with rare diseases.
Ivan Iourov defended his thesis "Epigenetic and genetic features of Rett syndrome" in 2004 and doctoral thesis "Structural and functional organization of chromosomes in the neuropsychiatric diseases" in 2011. He has been working in the field of molecular genetics and biological psychiatry since 1999 and is the co-author of three books ("Heterochromatic regions of human chromosomes, clinical and biological aspects of", "Human interphase chromosomes: biomedical aspects", "Genomic and chromosomal diseases of the central nervous system: molecular and cytogenetic aspects"), one patent (RU 2425890 C2), 210 journal articles and book chapters and over 400 abstracts. He is the founder, executive and section editor of Molecular Cytogenetics, chief editor of Journal of Neurology and Epidemiology, and member of the editorial boards of the journals «Current Genomics» and «Current Aging Science». Professor I.Y. Iourov has received a number of awards, including N.I. Vavilov medal for outstanding achievements in genetics, V.A. Tabolin award for outstanding scientific achievements in pediatrics, “Scopus Award Russia” for outstanding contributions to medical science, V.M. Bekhterev prize in neurology and psychiatry; the grant of the President of the Russian Federation.