13-17 May 2016 Russia, Kazan, "Kazan Riviera" Hotel & Mall
VIII WORLD RETT
SYNDROME CONGRESS
Congress Languages: English and Russian

Scientific Committee

Ivan Y Iourov

Иван Юрьевич Юров

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

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.

Angus Clarke

Доктор Кларк Ангус

School of Medicine, Cardiff University, prof, MD

He has interests in relation to Rett syndrome are the clinical and molecular genetics of Rett syndrome, the manage, went of difficult clinical problems, and the development of outcome measures for clinical trials. He also has research interests in ectodermal dysplasia. More generally, he has research interests in the process of genetic counseling, the social and ethical aspects of developments in human genetics and newborn screening for genetic disorders.

Dr. Eric E.J. Smeets

Доктор Эрик Э.Дж. Смитс

MD, PhD, is a consultant pediatrician and child neurologist at the Department of Clinical Genetics of the Maastricht University Medical Center, the Netherlands

He has a long standing experience with developmental disorders and genetic syndromes in children and adults with intellectual disability. He is the author and co-author of several articles on Rett syndrome and MECP2 related disorders. Together with prof. L. Curfs and dr. D. van Waardenburg he heads up the Rett Expertise Centre for the Netherlands, in Maastricht. His special interests are clinical management and brainstem physiology in Rett syndrome.

Professor Meir Lotan, PhD

Профессор Меир Лотан

Professor is a physiotherapist working as Senior lecturer at the School of Health Sciences, Department of Physical Therapy, Ariel University, Ariel, Israel

He is affiliated with the Israeli National Rett Syndrome evaluation team. He has been involved with individuals with Rett syndrome for the past 23 years, as a consultant, clinicians, and as a researcher. Meir Lotan has written several books and many articles regarding Rett syndrome over the past years, and was awrded for his devotion to Rett syndrome by IRSA on 1999, as well as for his contributin to research in Rett syndrome by IRSF in the year 2014.

Alessandra Renieri, M.D. Ph.D

Профессор  Алессандра Рениери

Full Professor of Medical Genetics University of Siena, Siena, Italy Director of Medical Genetics Unit Azienda Ospedaliera Universitaria Senese, Siena, Italy

Her main research interest has always been the study of the genetic basis of of rare diseases, with a special focus on Rett syndrome, and other conditions with intellectual disabilities (ID), Alport syndrome, retinoblastoma and other rare cancers. She identified two new genes disease: FACL4 gene for X-linked ID and FOXG1 gene for Rett syndrome. Her laboratory was among the first in Italy to introduce the technology of array-CGH and of Next Generation Sequencing. She has been involved in research on Rett syndrome for many years and she contributed to the identification of all 3 known genes presently associated to the disease, as well as to the definition of the associated clinical phenotype. In particular, her group identified FOXG1 as the first autosomal gene involved in Rett syndrome. Her laboratory is a referral center for Rett in Italy and, since 2002, she directs the Genetic Biobank of Siena (GBS, http://www.biobank.unisi.it), one of the few in Italy certified SIGU-CERT and ISO9001. GBS is the Italian Partner of BBMRI (Biobanking and Biomolecular Resources Research Infrastructure), member of EuroBioBank and RD-Connect. Within GBS there is a section dedicated to Rett syndrome that collects both samples and accurate patients clinical information (http://www.biobank.unisi.it/Elencorett.asp). Since 2009 she coordinates the international Rett database network (http://www.rettdatabasenetwork.org). In order to create a human cellular model for the study of the pathogenic mechanisms of Rett syndrome directly in human affected neurons, she set up the technique of genetic reprogramming in her laboratory (iPS). Research activities of Prof. Alessandra Renieri are substantiated by 180 original publications on international journals with a total IF of 801,858. She is author of 3 book chapters, 8 reviews made by request, and one N&V in Nat Genet. She has a H-index of 35, with a number of total citations of 4,605 and a number of articles in the last 10 years of 119.

LAURENT VILLARD, PhD

Лоран Виллард

Research Professor at Inserm Human Neurogenetics Laboratory Medical Genetics Unit Marseille - France

After a PhD in human genetics during which he took part in the mapping of the human genome, Laurent Villard performed post-doctoral research on Down syndrome in Denver (CO, USA). In 1997, he became Associate Professor at the French National Institutes of Health (Inserm) to study the genetic basis of intellectual disability. He conducted an extensive work on the X-linked alpha-thalassemia mental retardation (ATR-X) syndrome. In 2002, he was made Research Professor and he currently leads a group whose research interests include Rett syndrome and neonatal epilepsies (www.germaco.net). His Rett syndrome projects are focused on translational approaches and therapeutic development using pre-clinical models. He serves as an expert in several scientific advisory boards, is a member of the Rett Syndrome Networked Database, of the patient support groups think-tank (Gram) at Inserm and he was the coordinator of the former EuroRETT ERA-Net network. He teaches human and medical genetics and he is an author of >100 scientific publications during the last 20 years (about a third on Rett syndrome).

Prof. dr. Leopold M. G. Curfs

Профессор д-р. Леопольд М. Г. Керфс

Director of the Governor Kremers Centre at the Academic Hospital Maastricht and Maastricht University

He has a long standing experience with developmental disorders and genetic syndromes in children and adults with intellectual disability. He has published and presented extensively on medical, behavioral and psychiatric aspects of genetically determined neurodevelopmental disorders (e.g. Rett). He is the founder of the Rett expertise Centre in the Netherlands, officially recognized by the Dutch Government and together with dr. Smeets and dr. D. van Waardenburg he heads up this Rett Expertise Centre for the Netherlands. His special interests are clinical management, behavioral aspects and brainstem physiology in Rett syndrome.

Alan Percy, MD

Алан Перси

Pediatric Neurologist Place of Work: University of Alabama at Birmingham

Principal Academic Interests: Rett syndrome and related neurodevelopmental or neurodegenerative disorders of children. Research: Principal Investigator of NIH-funded Natural Istory Study of Rett Syndrome, MECP2 Duplication Disorders, and other Rett-related Disorders

Svetlana G Vorsanova

Светлана Григорьевна Ворсанова

PhD, Doctor of Sciences, Professor, Academician of Russian Academy of Natural History, Head of Laboratory of molecular cytogenetics of neuropsychiatric disorders at Research and Clinical Institute for Pediatrics at the Pirogov Russian National Research Medical University, Ministry of Health, Moscow

Professor Vorsanova is a head of of Laboratory of molecular cytogenetics of neuropsychiatric disorders at Research and Clinical Institute for Pediatrics at the Pirogov Russian National Research Medical University. She has more than 750 (H-index=30) publications in leading Russian and international scientific journals being also the author of 5 monographs and educational textbooks. She is a member of numerous expert committee member («Molecular Cytogenetics» (Springer), «Journal of Pediatric Neurology», «Journal of Pediatric Genetics», «Journal of Pediatric Neuroradiology», «Journal of Medical Case Reports», «Journal of Medicine and Medical Sciences»). Professor Vorsanova’s advances in scientific field are marked with honorary titles "Honored Worker of Health of the Russian Federation", "Honored Worker of Science and Education", "The founder of the scientific school", certificates of honor of Ministry of Health of the Russian Federation, medal named after N.I. Vavilov for outstanding work in the field of genetics and A. Nobel’s medal for contribution to the development of innovation. She is elected as a member of the New York Academy of Sciences. She is also a winner of the national award "For outstanding achievements in the development of Russian science", Prize named by V.M. Bekhterev in neurology and psychiatry, and a prestigious international award “Scopus Award Russia” in the field of medicine "for outstanding contribution to the science of medicine"

Yuri B Yurov

Юрий Борисович Юров

PhD, Doctor of Sciences, Professor, Academician of Russian Academy of Natural History, Head of Laboratory of cytogenetics and genomics of psychiatric disorders at Mental Health Research Center

Professor Yurov is a head of laboratory of cytogenetics and genomics of psychiatric disorders at Mental Health Research Center. He has more than 750 publications and also is the author of 5 monographs and educational textbooks. With h-index equal to 35, he is a co – founder and editor-in-chief of «Molecular Cytogenetics» (Springer) and a member of editorial board of «Journal of Pediatric Neurology», «Current Aging Science», «World Journal of Psychiatry». Scientific achievements of Professor Yurov are marked with the honorary titles of "Founder of a scientific school", medal of A. Nobel for contribution to the development of inventions and N.I. Vavilov’s medal for outstanding work in the field of genetics, as well as many awards and diplomas of Russian Academy of Medical Sciences. He is the winner of the national award "For outstanding achievements in the development of Russian science," Prize named by V.M. Bekhterev in neurology and psychiatry, and a prestigious international award “Scopus Award Russia” in the field of medicine "for outstanding contribution to the science of medicine".

Plan of the events

  • Carrying more than 10 round tables, scientific sections on Rett syndrome
  • Publication of the scientific materials of the Congress
  • Parent school and workshops
  • Visiting medical and rehabilitation facilities of the city
  • Exhibition of medical, rehabilitation, training equipment
  • Charity concert, auction
See the program
Kazan Riviera

The conference will be held in "Kazan Riviera"

The organizers of the Congress

With support of the President of the Republic of Tatarstan RN Minnikhanov president.tatarstan.ru.


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Guests of the Congress

Representatives of the Federation Council and the State Duma of the Federal Assembly of the Russian Federation, members of the Public Chamber of the Russian Federation, specialists of relevant ministries, and representatives of patient organizations, scientists and experts, international organizations, parents of children with Rett syndrome, all interested citizens are invited to the congress.


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