{"id":2,"date":"2014-11-19T09:01:19","date_gmt":"2014-11-19T09:01:19","guid":{"rendered":"http:\/\/www.eard.eu\/?page_id=2"},"modified":"2014-11-28T19:34:52","modified_gmt":"2014-11-28T17:34:52","slug":"%d0%bf%d1%80%d0%b8%d0%bc%d0%b5%d1%80%d0%bd%d0%b0-%d1%81%d1%82%d1%80%d0%b0%d0%bd%d0%b8%d1%86%d0%b0","status":"publish","type":"page","link":"https:\/\/www.eard.eu\/?page_id=2","title":{"rendered":"\u0417\u0410 \u0410\u041b\u0418\u0410\u041d\u0421\u0410"},"content":{"rendered":"<p style=\"text-align: justify;\"><a href=\"https:\/\/www.eard.eu\/wp-content\/uploads\/2014\/11\/baner.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-467 size-medium\" src=\"https:\/\/www.eard.eu\/wp-content\/uploads\/2014\/11\/baner-131x300.jpg\" alt=\"baner\" width=\"131\" height=\"300\" srcset=\"https:\/\/www.eard.eu\/wp-content\/uploads\/2014\/11\/baner-131x300.jpg 131w, https:\/\/www.eard.eu\/wp-content\/uploads\/2014\/11\/baner.jpg 360w\" sizes=\"auto, (max-width: 131px) 100vw, 131px\" \/><\/a>Texts First conferences Mockou<\/p>\n<p style=\"text-align: justify;\">\u00a0<strong>Information Letter<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>\u00a0<\/strong> The <strong>First Eurasian Conference for Rare Diseases and Orphan Drugs &amp; Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies \u201cLifeline\u201d<\/strong> was taking place in <strong>Moscow \u00ad\u00ad\u00ad\u00ad\u00adon June, 21-23, 2012.<\/strong><\/p>\n<p style=\"text-align: justify;\">One of the features of this event will be the simultaneous participation of all parties interested in developing the treatment, diagnosis, and working out innovative treatments for rare diseases: patients, medical and social workers, representatives of public authorities, physicians, researchers, pharmaceutical manufacturers, and non-profit organizations from different countries of the world. These conferences \u2013 the first since 2010 \u2013 constitute a unique resource, which provides an effective platform for sharing experiences, not only between Russian and foreign participants, but they also represent a powerful tool for developing integration processes between Eurasian countries. The conferences will bring together representatives from 31 countries.<\/p>\n<h3 style=\"text-align: justify;\">Conference were focus on the following topics:<\/h3>\n<ul style=\"text-align: justify;\">\n<li>The First Eurasian Conference on Rare Diseases &amp; Orphan Products\u00a0 were aimed at the \u201cGlobal Policy on Rare Diseases and Rare Orphan Drag\u201d;<\/li>\n<li>The Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies \u201cLifeline concerns the most actual topic in our country at the moment \u2013 managing epidemiology, establishing registers, standards of treatment and rehabilitation, and another important aspect \u2013 palliative care for patients with rare diseases.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">A group working on the EUROPLAN2 project were organized at these conferences (meeting of participants of two seminars \u2013 \u201cRare Diseases as a Priority for Public Health and One of the Strategic Directions of State Policy\u201d, held in September, 2011 and April, 2012 within the framework of the EUROPLAN2 projects); the results of the EPIRARE project (project on epidemiological registers) were also presented. For the first time in our country, such conferences was include a plenary meeting, during which the representatives of the largest Russian and European pharmaceutical companies werel appear and present their work in the field of global international policy.<\/p>\n<h3 style=\"text-align: justify;\"><\/h3>\n<h3 style=\"text-align: justify;\">Conference Organizers<\/h3>\n<ul style=\"text-align: justify;\">\n<li>the National Association of patients with rare diseases &#8211; &#8220; Genetics &#8222;<\/li>\n<li>Federal State Budgetary Institution \u2013 Federal Scientific and Clinical Center of Pediatric Hematology, Oncology and Immunology named after Dmitriy Rogachev<\/li>\n<li>the Eurasian Alliance of rare disease<\/li>\n<li>the Bulgarian Association for the Advancement of Education and Science<\/li>\n<li>the National Centre for Rare Diseases of the Italian Institute of Public Health<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">\nThe Conference were held under the official auspices of the Ministry of Health Care and Social Development of the Russian Federation.<\/p>\n<h3 style=\"text-align: justify;\">General Information<\/h3>\n<p style=\"text-align: justify;\">Conference dates: June 21-23, 2012<br \/>\nCity and country: Moscow, Russia<br \/>\nVenue: Hotel \u201cIzmailovo\u201d, Moscow, 71 Izmailovo Road, Buildings \u201cGamma-Delta\u201d.<\/p>\n<p>Conference Website: <a href=\"http:\/\/www.rareconf2012.org\/\"><strong>www.rareconf2012.org<\/strong><\/a><\/p>\n<p><strong><br \/>\nFirst Balkan Conference<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>In 2012 the organization aims to further improve the form in which it has been developing until now.<\/strong><strong> This is a natural result of the successful activity on a national level and the huge differentiation between the health systems of the Member States of the European Union<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>In the start of its activity NAPRD<\/strong><strong> introduced the path of its development<\/strong><strong> in international meetings on a Balkan level<\/strong><strong> \u2013 Serbia<\/strong><strong> , Macedonia<\/strong><strong> , Croatia<\/strong><strong> , Romania<\/strong><strong>. Consequent<\/strong><strong> to that in those countries associations of patients affected by rare diseases were started and began their development.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 <\/strong><strong><em>NAPRD<\/em><\/strong><strong> was part of the organizing committee and presented its experience in the first<\/strong><strong> National rare diseases conferences in<\/strong><strong> Russia<\/strong><strong>, Georgia<\/strong><strong> and Turkey<\/strong><strong> .<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>In order to achieve greater efficiency through exchange of experience and unification of efforts NAPRD was initiator and was organize <\/strong><strong>Balkan Patient Meeting \u201cTogether To Success\u201d<\/strong><strong>.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>The Event was take place in Sofia, in Park-Hotel Moscow between 23<sup>th<\/sup> and 25<sup>th<\/sup> of March 2012.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Lead representatives of the patient movement from European and international organizations was invited.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Representatives from the Balkan countries was present from<\/strong><strong> \u2013 Greece<\/strong><strong> , Romania<\/strong><strong>, Turkey<\/strong><strong> , Croatia<\/strong><strong> , Montenegro<\/strong><strong> , Slovenia<\/strong><strong> , Serbia<\/strong><strong> , Bosnia and Herzegovina<\/strong><strong> , Macedonia and<\/strong><strong> Albania<\/strong><strong>.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Special guests were our partners from Russia and Georgia.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>The number of participants was 200.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Leading specialists in the field were present their accomplishments and problems in the area on a national and international level.<\/strong><\/p>\n<p style=\"text-align: justify;\">\n<p style=\"text-align: justify;\">We discussed important issues. Everybody truly believe that the dialog is the first step to resolve problems regarding rare diseases. This is also the main task for the National Alliance of People with Rare Diseases &#8211; validation and implementation of common European values <strong>universality<\/strong>, <strong>access to <\/strong>good quality<strong> health care<\/strong>, <strong>justice and solidarity<\/strong><strong>. <\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>\u00a0<\/strong><\/p>\n<p style=\"text-align: justify;\">Patient and Associations, members of NAPRD were active involved in the event. .<\/p>\n<p style=\"text-align: justify;\"><strong>We NAPRD believe that the realization of the meeting was great benefit not only for people with rare diseases from Balkan Countries but also for the Patients organization worldwide.In 2012 the organization aims to further improve the form in which it has been developing until the event.<\/strong> <strong>This is a natural result of the successful activity on a national level and the huge differentiation between the health systems of the Member States of the European Union<\/strong><\/p>\n<p style=\"text-align: justify;\">\u00a0Seccond Balkan conference<\/p>\n<p style=\"text-align: justify;\"><strong>In 2013 the organization is aiming to further improve the form in which it has been developing until now. This is a natural result of the successful activity of the organization at a national level and the huge differences we realise between the health systems of the European Uniont Member States.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>NAPRD presented the development and the activities of the organization at a number of international meetings within the Balkan region, like Serbia , Macedonia , Croatia , Romania. As a result of the exchange of experience and policies at these meetings associations of patients affected by rare diseases in those countries were founded and developed.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>As a part of the organizing committee <\/strong><strong><em>NAPRD<\/em><\/strong><strong> also presented its experience at the first national rare diseases conferences in Russia, Georgia and Turkey .<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>In order to improve the network efficiency and the exchange experience between the Balkan countries NAPRD is organizin a <\/strong><strong>Second<\/strong> <strong>Balkan Patients Meeting to be held in Sofia, in Park-Hotel Moscow between 20<sup>th<\/sup> and 21<sup>th<\/sup> of April 2013 under the title <em>\u201cBetter Communication \u2013 Better Treatment\u201d.<\/em><\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Leading representatives of the patient movement from European and international organizations will take part at the meeting.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>Representatives from the Balkan countries like Greece, Romania, Turkey , Croatia , Montenegro , Slovenia , Serbia , Bosnia and Herzegovina , Macedonia and Albania will be presented. <\/strong>Patient and Associations members of NAPRD will be actively involved in the event.<\/p>\n<p style=\"text-align: justify;\"><strong>Leading specialists in the scientific and medical fields will present their accomplishments and discuss their views in the rare diseases area bot at a national and international levels.<\/strong><\/p>\n<p style=\"text-align: justify;\">The validation and implementation of common European values like <strong>universality<\/strong>, <strong>access to <\/strong>good quality<strong> health care<\/strong>, <strong>justice and solidarity will be among the main topics of the discussiona.<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong>The number of participants was more then 200.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Texts First conferences Mockou \u00a0Information Letter \u00a0 The First Eurasian Conference for Rare Diseases and Orphan Drugs &amp; Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies \u201cLifeline\u201d was taking place in Moscow \u00ad\u00ad\u00ad\u00ad\u00adon June, 21-23, 2012. One of the features of this event will be the simultaneous participation of all parties interested [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","meta":{"footnotes":""},"class_list":["post-2","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/pages\/2","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.eard.eu\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=2"}],"version-history":[{"count":5,"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/pages\/2\/revisions"}],"predecessor-version":[{"id":468,"href":"https:\/\/www.eard.eu\/index.php?rest_route=\/wp\/v2\/pages\/2\/revisions\/468"}],"wp:attachment":[{"href":"https:\/\/www.eard.eu\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=2"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}