{"id":4423,"date":"2016-03-08T13:21:04","date_gmt":"2016-03-08T13:21:04","guid":{"rendered":"https:\/\/jurmed.ro\/pacienti\/?p=4423"},"modified":"2016-03-08T13:22:31","modified_gmt":"2016-03-08T13:22:31","slug":"orto-clinic-se-alatura-zilei-internationale-a-bolilor-rare","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/pacienti\/orto-clinic-se-alatura-zilei-internationale-a-bolilor-rare\/","title":{"rendered":"Orto-Clinic se al\u0103tur\u0103 Zilei Interna\u021bionale a Bolilor Rare"},"content":{"rendered":"<p style=\"text-align: justify\"><strong>Ziua interna\u021bional\u0103 a Bolilor Rare, marcat\u0103 pe 29 februarie\u00a0<\/strong><strong>de pacien\u021bi, medici, organiza\u021bii \u0219i lideri de opinie<\/strong><\/p>\n<ul style=\"text-align: justify\">\n<li><em>O boal\u0103 rar\u0103 este considerat\u0103 orice afec\u0163iune prezent\u0103 la mai pu\u0163in de 1 din 2000 de persoane <\/em><\/li>\n<li><em>\u00cen UE, cel pu\u0163in 30 de milioane de persoane ar putea fi afectate de una din cele peste 6.000 de boli rare existente. <\/em><\/li>\n<li><em>Conform datelor Comunit\u0103\u0163ii Europene, 6-8% din popula\u0163ie prezint\u0103 una din aceste boli, ceea ce raportat la popula\u0163ia Rom\u00e2niei, ar reprezenta un num\u0103r de minimum 1.000.000 de persoane.<\/em><\/li>\n<li><em>80% din bolile rare au origini genetice \u00een timp ce altele sunt rezultatul infec\u021biilor (bacteriene sau virale), alergiilor \u015fi factorilor de mediu. Pot fi degenerative \u0219i proliferative. <\/em><\/li>\n<li><em>50% din bolile rare afecteaz\u0103 \u015fi copiii <\/em><\/li>\n<\/ul>\n<p style=\"text-align: justify\">Date conform <a href=\"http:\/\/insp.gov.ro\/sites\/cnepss\/wp-content\/uploads\/2016\/01\/Analiza-de-situatie-2016.pdf\"><strong>Institutului Na\u021bional de S\u0103n\u0103tate Public\u0103<\/strong><\/a>\u0219i <a href=\"http:\/\/www.eurordis.org\/about-rare-diseases\"><strong>EURORDIS<\/strong><\/a><\/p>\n<p style=\"text-align: justify\"><strong>Pe\u00a0 29 februarie, lumea medical\u0103 \u0219i pacien\u021bii din \u00eentreaga lume vor marca\u00a0<\/strong><strong>Ziua Interna\u021bional\u0103 a Bolilor Rare<\/strong>, o dat\u0103 ce este stabilit\u0103 \u00een ultima zi din februarie a fiec\u0103rui an la nivel global. Ziua Interna\u021bional\u0103 a Bolilor Rare a fost lansat\u0103 de <strong>EURORDIS<\/strong> \u0219i <strong>Consiliul Alian\u021belor Na\u021bionale <\/strong>\u00een 2008 \u0219i de atunci, c\u00e2teva mii de evenimente \u00een peste 80 de \u021b\u0103ri au fost organizate pentru vizibilitatea \u0219i atragerea aten\u021biei c\u0103tre afec\u021biunile rare ale pacien\u021bilor.<\/p>\n<p style=\"text-align: justify\"><strong>\u00cencep\u00e2nd din 2016, clinica de ortopedie pediatric\u0103 \u0219i recuperare medical\u0103 adresat\u0103 copiilor cu afec\u021biuni neuro-motorii\u00a0<\/strong><strong>Orto-Clinic\u00a0<\/strong>s-a al\u0103turat efortului interna\u021bional de a marca aceast\u0103 zi, dat fiind c\u0103, \u00een cei 8 ani de func\u021bionare a clinicii, medicii \u0219i terapeu\u021bii s-au confruntat cu patologii rare \u0219i au \u00eenregistrat, dup\u0103 luni \u0219i ani de terapie, evolu\u021bii vizibile ale micilor pacien\u021bi, cu scopul final de a atinge recuperarea lor maxim\u0103 \u0219i a se integra cu succes \u00een societate.<\/p>\n<p style=\"text-align: justify\"><a href=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2016\/03\/recuperare-medicala.jpg\" rel=\"attachment wp-att-4424\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-medium wp-image-4424\" src=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2016\/03\/recuperare-medicala-300x214.jpg\" alt=\"recuperare medicala\" width=\"300\" height=\"214\" srcset=\"https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2016\/03\/recuperare-medicala-300x214.jpg 300w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2016\/03\/recuperare-medicala-768x548.jpg 768w, https:\/\/jurmed.ro\/pacienti\/wp-content\/uploads\/sites\/3\/2016\/03\/recuperare-medicala.jpg 784w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/a>\u00cen cadrul <strong>Orto-Clinic<\/strong>, de-alungul timpului, o serie de afec\u021biuni rare au fost identificate la pacien\u021bi, unii dintre ace\u0219tia urm\u00e2nd terapiile de tratament \u0219i recuperare \u00eenc\u0103 din primele luni de via\u021b\u0103. Astfel, al\u0103turi de cazurile clinice specifice specializ\u0103rilor de ortopedie \u0219i afectare neuro-motorie pediatric\u0103,\u00a0 medicii din cadrul Orto-Clinicau conceput programe de tratament\u0219i recuperare pentru pacien\u021bi diagnostica\u021bi, cu patologii rare precum:<\/p>\n<ul style=\"text-align: justify\">\n<li><strong><em>sindromul Joubert<\/em><\/strong> (afec\u021biune genetic\u0103 rar\u0103, ce apare la un copil din 100.000 na\u0219teri, \u00een care este afectat\u0103 o parte a cerebelului responsabil\u0103 de echilibru \u0219i coordonare),<\/li>\n<li><strong><em>dele\u021bie de cromozom18<\/em><\/strong>(o boal\u0103 genetic\u0103 prin care fenotipul persoanelor afectate, de\u015fi poate fi foarte variabil, se caracterizeaz\u0103 \u00een principal prin retardare mintal\u0103, statur\u0103 mic\u0103, hipotonie, deficien\u0163e de auz \u015fi deform\u0103ri ale membrelor inferioare),<\/li>\n<li><strong><em>scleroza tuberoas\u0103<\/em><\/strong> (o boal\u0103 cu afectare genetic\u0103, denumit\u0103 \u0219i sindromul Bourneville, cu multiple manifest\u0103ri la nivelul tuturor organelor \u0219i sistemelor corpului, cu dezvoltare de tumori),<\/li>\n<li><strong><em>acondroplazie<\/em><\/strong> (cea mai comuna form\u0103 de dwarfism, o boal\u0103 genetic\u0103 cu transmitere autozomal dominant\u0103, ce const\u0103 \u00een defectul unei gene care dicteaz\u0103 formarea celulelor osoase), etc.<\/li>\n<\/ul>\n<p style=\"text-align: justify\"><strong>Dr.D <\/strong><a href=\"http:\/\/www.orto-clinic.ro\/articol\/curriculum-vitae-andra-dinu\"><strong>Andra Dinu, fiziokinetoterapie \u0219i recuperare medical\u0103<\/strong><\/a><strong>, Orto-Clinic<\/strong>:&#8221;<em>Experien\u021ba ultimilor ani ne-a ar\u0103tat c\u0103 patologia pediatric\u0103 de reabilitare este \u00een continu\u0103 mi\u0219care \u0219i schimbare. \u00cen concordan\u021b\u0103 cu dinamica patologiilor estimate la nivel de nou n\u0103scu\u021bi \u0219i copii mici, aria afec\u021biunilor pediatrice s-a extins \u00eenc\u0103 de la na\u0219tere, din p\u0103cate, incluz\u00e2nd boli rare, congenitale. Astfel, \u00een ultimii ani, am \u00eenregistrat o cre\u0219tere a cererii pentru diagnosticarea,\u00a0 tratamentul \u0219i recuperarea afec\u021biunilor de tip ortopedic, a\u0219a cum sunt luxa\u021bia congenital\u0103 de \u0219old, varus-equin \u0219i afec\u021biunile neuro-motorii dar \u0219i a patologiilor rare, cu ample implica\u021bii \u00een dezvoltarea \u0219i \u00een integrarea social\u0103 a pacien\u021bilor afecta\u021bi.&#8221;<\/em><\/p>\n<p style=\"text-align: justify\"><strong>Dr. Valentina Contanu, Medic Specialist Ortopedie Pediatric\u0103, Orto-Clinic<\/strong><strong>: <\/strong>&#8222;<em>Prin participarea \u00een calitate de <strong>Prieten al Zilei Interna\u021bionale a Bolilor Rare<\/strong>, dorim s\u0103 marc\u0103m aten\u021bia deosebit\u0103 pe care acest tip de afec\u021biuni o ridic\u0103, at\u00e2t la nivel social \u0219i familial, c\u00e2t \u0219i la nivelul l\u0103rgit al societ\u0103\u021bii \u0219i factorilor decizionali, prin stabilirea planurilor na\u021bionale de abordare a acestor afec\u021biuni \u0219i acordare de sprijin pacien\u021bilor \u0219i familiilor acestora.&#8221;<\/em><\/p>\n<p style=\"text-align: justify\"><strong>DESPRE ALIAN\u021aA NA\u021aIONAL\u0102 PENTRU BOLI RARE DIN ROM\u00c2NIA <\/strong><\/p>\n<p style=\"text-align: justify\">\u00cen Rom\u00e2nia, \u00een august 2007, la ini\u021biativa Asocia\u021biei Prader Willi din\u00a0 Rom\u00e2nia, a fost \u00eenfiin\u021bat\u0103 Alian\u021ba Na\u021bional\u0103 pentru Boli Rare din Rom\u00e2nia, printr-un proiect finan\u021bat de c\u0103tre CEE Trust.\u00a0 Pentru \u00eenfiin\u021barea Alian\u021bei \u0219i-au reunit eforturile\u00a0 32 de membri fondatori: organiza\u021bii de boli rare \u0219i grupuri de pacien\u021bi pentru care boala este at\u00e2t de rar\u0103 \u00eenc\u00e2t nu exist\u0103 o asocia\u021bie. Misiunea ANBRaRo este aceea de a dezvolta \u0219i derula activit\u0103\u021bi de lobby \u0219i advocacy pentru \u00eembun\u0103t\u0103\u021birea calit\u0103\u021bii vie\u021bii pacien\u021bilor cu boli rare din Rom\u00e2nia<\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.bolirareromania.ro\"><strong>http:\/\/www.bolirareromania.ro<\/strong><\/a><\/p>\n<p style=\"text-align: justify\"><strong>DESPRE ZIUA INTERNA\u021aIONAL\u0102\u00a0 A BOLILOR RARE <\/strong><\/p>\n<p style=\"text-align: justify\">Ziua Interna\u021bional\u0103 a Bolilor Rare a fost lansat\u0103 de <strong>EURORDIS<\/strong> \u0219i <strong>Consiliul Alian\u021belor Na\u021bionale <\/strong>\u00een 2008, cu scopul de a atrage aten\u021bia asupra pacien\u021bilor d\u00een Europa \u0219i \u00eentreaga lume care se confrunt\u0103 cu aceste afec\u021biuni. EURORDIS este o alian\u021b\u0103 bazat\u0103 pe pacient non -guvernamentale organiza\u021biilor de pacien\u021bi care reprezint\u0103 organiza\u021biile de 705 de boli rare de pacien\u021bi \u00een 63 de \u021b\u0103ri. Reprezint\u0103 vocea de 30 de milioane de persoane afectate de boli rare din Europa. Prin parteneriatul s\u0103u cu alian\u021bele na\u021bionale pentru boli rare, EURORDIS contribuie la strategiile na\u021bionale\u00a0 \u0219i faciliteaz\u0103 adoptarea \u0219i punerea \u00een aplicare a planurilor na\u021bionale \u0219i a strategiilor pentru boli rare \u00een \u021b\u0103rile europene.<\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.rarediseaseday.org\"><strong>http:\/\/www.rarediseaseday.org<\/strong><\/a><\/p>\n<p style=\"text-align: justify\"><strong>DESPRE ORTO-CLINIC<\/strong><\/p>\n<p style=\"text-align: justify\">Orto-Clinic func\u021bioneaz\u0103 pe pia\u021ba de servicii medicale din Rom\u00e2nia din 2008, anul in care au fost puse bazele unui centru medical destinat diagnostic\u0103rii, tratamentului \u0219i recuper\u0103rii afec\u021biunilor ortopedice \u0219i neuro-motorii pediatrice. Ini\u021bial, proiectul, dezvoltat \u00een majoritate din fonduri proprii ca investi\u021bie privat\u0103, a fost creat s\u0103 sus\u021bin\u0103 activitatea specific\u0103 unei clinici \u0219i a unui centru de recuperare pentru copii. Ast\u0103zi, Orto-Clinic dezvolt\u0103\u00a0programe de recuperare neuro-motorie \u0219i de kinetoterapie, conform celor mai recente terapii dezvoltate pentru copii \u0219i adolescen\u021bi.<\/p>\n<p style=\"text-align: justify\"><a href=\"http:\/\/www.orto-clinic.ro\/\"><strong>http:\/\/www.orto-clinic.ro<\/strong><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ziua interna\u021bional\u0103 a Bolilor Rare, marcat\u0103 pe 29 februarie\u00a0de pacien\u021bi, medici, organiza\u021bii \u0219i lideri de opinie O boal\u0103 rar\u0103 este considerat\u0103 orice afec\u0163iune prezent\u0103 la mai pu\u0163in de 1 din [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":4427,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-4423","post","type-post","status-publish","format-standard","has-post-thumbnail","category-stiri-noutati"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - 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