International conference on rare diseases in tbilisi, 2010.

The "International Conference on Rare Diseases" took place in Tbilisi, Georgia on September 10-11, 2010. It happened so that it became the first one dedicated to this topic in Southern Caucasus. The conference was organized by the Georgian Foundation for Genetic and Rare Diseases, JSC Traumatologist and Tbilisi State Medical University, namely, Department of Child & Adolescent Medicine. The event enjoyed a substantial backing rendered by the Charity-Humanitarian- Foundation "SOCO", and its director and founder Sandra Elisabeth Roelofs, the First Lady of Georgia, within the framework of the "SOCO" project "Alliance for Rare Diseases". The following institutions and organizations provided valuable organizational and financial support as well: National Center for Disease Control and Public Health; Health & Social Program Agency; Georgian Association of Dermatovenerologists; I. Paghava Scientific Research Institute of Pediatrics. ; The conference was co-chaired by K. Pagava, M. Chkhatarashvili, T. Chigladze. Mrs. Sandra Elisabeth Roelofs, the First Lady of Georgia inaugurated the conference by means of a video address. Minister of labor, health and social Affairs of Georgia A. Urushadze and Rector of the Tbilisi State Medical University Z. Vadachkoria greeted the participants as well. Besides the scholars, healthcare workers and Parent organizations representatives from Georgia, guests from 8 countries (Armenia, Azerbaijan, Bulgaria, Canada, Germany, Netherlands, Poland and Russian Federation) took part in this scientific event. The motto of the conference was "Bridging patients & researchers". Correspondingly the conference was devoted to the diagnostics and treatment of various specific rare diseases as well as the general approaches to various modes of their nationwide management. In all 22 communications were delivered. The participants from various countries shared their respective national as well as international experience in dealing with the issue of the rare diseases, including defining and shaping the national priorities, legislation, data gathering and multi-institutional cooperation: "Alliance for Rare Diseases" (E. Aptsiauri, I. Bulia and N. Manjaparashvili); "Patient's influence on law-making initiatives in Bulgaria" (V. Tomov, Bulgaria); "Rare Diseases - Aspects of Management" (K. Pagava, I. Korinteli, T. Kisileva, N. Uberi, Ts. Parulava, M. Kvezereli-Kopadze, I. Pagava and M. Korinteli, Georgia); "Crossing borders for Rare Diseases" (L. Siderius, Netherlands); "Information and data gathering as a compound component of the help to people with rare illnesses and their families" (S. Karimova, Russian Federation); "Armenian Experience in the field of rare diseases" (A. Matevosyan, Armenia). Presenting authors covered comprehensively various rare diseases and their management, including the following disorders: hemangioma (T. Kutubidze and B. Zenaishvili, Georgia); haemophilia and other coagulopathic diseases (R. Khomasuridze, Georgia); McCune-Albright syndrome (U. Seyidova, Azerbaijan); osteogenesis imperfecta (discussed by F. Fassier from Canada and T. Chigladze, M. Chkhatarashvili, a team of Georgian doctors); phenylketonuria (L. Margvelashvili, Georgia); Cornelia de Lange Syndrome (J. Wierzba and T. Wierzba, Poland); Sjogren's syndrome and associated complications (T. Chachibaia, Tbilisi); spinal muscular atrophy (E. Khmaladze and P. Imnadze, Georgia); ? thalassemia major (Z. Mtvarelidze, M. Kvezereli-Kopadze and A. Kvezereli-Kopadze, Georgia). Some of the participants devoted their presentations to the general issue of the rare diseases in the fields of the medicine that they are active in: dermatology (T. Kituashvili, O. Kvlividze and G. Galdava, Georgia), gastroenterology and abdominal surgery (K. Pachkoria, S. Kemoklidze, Georgia); pediatric rheumatology (M. Ioseliani, M. Lekishvili, Georgia); growth disorders, secondary to the rare diseases like Silver-Russell, Laron and Prader-Willi Syndromes (N. Davituliani, M. Rekhviashvili, R. Morgoshia and D. Metreveli, Georgia). The issues of osteoporosis in orthopaedics (Varto Seeid, Germany) and joints prostheses in cancer pathology (T. Katsitadze and T. Nozadze, Georgia) were also regarded. Various aspects of healthcare system and clinical approaches to the general issue of rare diseases and their management were discussed during the culminative Round Table session (guided by G. Abesadze from Georgia and L. Siderius from the Netherlands). It was considered to be reasonable to carry out in Tbilisi conferences on rare diseases on the regular basis. A hope was fostered that such events would contribute its mite into alleviating the burden of the rare diseases to the humankind, by disseminating the data required for improving the clinical outcome for the millions of patients suffering from the thousands of generally neglected orphan (rare) diseases.

Source : http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?tmpl=NoSidebarfile&db=PubMed&cmd=Retrieve&list_uids=21617287&dopt=Abstract

Partager