{"id":19156,"date":"2026-10-08T12:16:40","date_gmt":"2026-10-08T10:16:40","guid":{"rendered":"https:\/\/jurmed.ro\/medici\/?p=19156"},"modified":"2026-10-08T12:16:40","modified_gmt":"2026-10-08T10:16:40","slug":"peste-300-de-pacienti-cu-boala-wilson-cer-acces-la-tratament-si-diagnostic-mai-rapid","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/medici\/peste-300-de-pacienti-cu-boala-wilson-cer-acces-la-tratament-si-diagnostic-mai-rapid\/","title":{"rendered":"Peste 300 de pacienti cu boala Wilson cer acces la tratament si diagnostic mai rapid"},"content":{"rendered":"<p style=\"text-align: justify;\"><strong>316 pacienti cu boala Wilson se aflau, in 2023, in evidentele Asociatiei \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d, date confirmate, potrivit organizatiei, si de Casa Nationala de Asigurari de Sanatate. Numarul real al persoanelor afectate este insa necunoscut, iar asociatia semnaleaza o crestere a cazurilor identificate in randul copiilor. Pentru pacienti, printre principalele nevoi se numara diagnosticul la timp, accesul la tratament si un cadru national clar pentru monitorizare si ingrijire.<\/strong><\/p>\n<p style=\"text-align: justify;\">Diagnosticul unei boli hepatice rare poate reprezenta inceputul unui parcurs medical dificil, marcat de investigatii complexe, acces inegal la specialisti si provocari in obtinerea tratamentului adecvat. Pentru persoanele care traiesc cu boala Wilson, aceste dificultati sunt insotite de nevoia unor solutii concrete care sa asigure continuitatea ingrijirii si sanse reale la o viata cat mai apropiata de normalitate. Aceste provocari au fost aduse in discutie in cadrul webinarului \u201eColestaza si alte boli hepatice rare: provocari in diagnostic si acces la ingrijire\u201d, parte a seriei Share Experience 2026, organizata de Alianta Nationala pentru Boli Rare Romania si Asociatia Romana de Cancere Rare, cu sprijinul Ipsen, UCB, Sanofi, MSD si Johnson &amp; Johnson.<\/p>\n<p style=\"text-align: justify;\">La discutie au participat Prof. Dr. Tudor Pop, de la UMF \u201eIuliu Hatieganu\u201d Cluj-Napoca, Marinela Debu, presedinta Asociatiei Pacientilor cu Afectiuni Hepatice, si Andreea Irimiciuc, reprezentanta Asociatiei \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d. Webinarul a fost moderat de Dorica Dan, reprezentanta Aliantei Nationale pentru Boli Rare Romania.<\/p>\n<p style=\"text-align: justify;\">Boala Wilson este o afectiune genetica rara care impiedica organismul sa elimine in mod corespunzator excesul de cupru. Acesta se poate acumula in ficat, creier si alte organe, provocand manifestari diverse. Recunoasterea timpurie a bolii si initierea tratamentului sunt importante pentru prevenirea complicatiilor si mentinerea calitatii vietii.<\/p>\n<p style=\"text-align: justify;\">Asociatia \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d a fost infiintata in 2023, pornind de la nevoia pacientilor de a avea acces la tratament si de a fi reprezentati in dialogul cu autoritatile.<\/p>\n<p style=\"text-align: justify;\">Andreea Irimiciuc, persoana care traieste cu boala Wilson si membra a Consiliului Director al asociatiei, contribuie la aceasta misiune prin implicarea in informarea publicului si reprezentarea nevoilor comunitatii.<\/p>\n<p style=\"text-align: justify;\"><em>\u201eIn spatele fiecarui diagnostic de boala rara se afla un om care are nevoie de raspunsuri, de tratament si de siguranta ca nu este singur. Pentru pacientii cu boala Wilson, accesul la tratamentul potrivit si la informatii corecte poate face o diferenta majora. Ne dorim ca diagnosticul sa vina la timp si niciun pacient sa nu fie pus in situatia de a lupta singur pentru accesul la ingrijirea de care are nevoie.\u201d <\/em>\u2013 spune Andreea Irimiciuc, Asociatia \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d<\/p>\n<p style=\"text-align: justify;\">Pentru asociatie, schimbarea inseamna atat masuri concrete de acces la diagnostic si tratament, cat si reducerea stigmei asociate bolilor rare. Informarea corecta, increderea si sprijinul comunitatii sunt esentiale pentru ca pacientii sa poata solicita ajutor si sa ramana implicati in propria ingrijire.<\/p>\n<p style=\"text-align: justify;\">Desi bolile hepatice rare pot avea cauze si manifestari diferite, pacientii se pot confrunta cu dificultati similare: simptome nespecifice, investigatii complexe, intarzieri pana la stabilirea diagnosticului si acces limitat la specialisti cu experienta in aceste afectiuni.<\/p>\n<p style=\"text-align: justify;\"><em>\u201eIn cazul bolilor hepatice rare, diversitatea manifestarilor clinice poate face ca diagnosticul sa fie dificil si tardiv. Recunoasterea timpurie a semnelor care ridica suspiciunea unei astfel de afectiuni, colaborarea dintre specialitati si mai ales cu centrele cu expertiza in bolile rare hepatice pediatriace sunt importante pentru orientarea pacientului catre investigatiile si ingrijirea adecvate.\u201d<\/em> \u2013 spune Prof. Dr. Tudor Pop, UMF \u201eIuliu Hatieganu\u201d Cluj-Napoca.<\/p>\n<p style=\"text-align: justify;\">Din perspectiva pacientilor si a organizatiilor care ii reprezinta, accesul la servicii medicale nu se rezuma la stabilirea diagnosticului. Continuitatea ingrijirii, disponibilitatea tratamentelor si comunicarea dintre pacient si echipa medicala sunt, de asemenea, componente importante ale parcursului terapeutic.<\/p>\n<p style=\"text-align: justify;\"><em>\u201eUn diagnostic corect este un pas esential, dar pacientii au nevoie si de acces la specialisti, investigatii si tratamente pe termen lung. Organizatiile de pacienti pot contribui la identificarea problemelor intampinate in practica si la sustinerea unor solutii care sa raspunda nevoilor reale ale oamenilor.\u201d<\/em> \u2013 spune Marinela Debu, presedinta Asociatiei Pacientilor cu Afectiuni Hepatice.<\/p>\n<p style=\"text-align: justify;\">In cazul bolii Wilson, prioritatile formulate de comunitatea pacientilor indica nevoia unor masuri coordonate: diagnostic mai rapid, acces la optiuni terapeutice adecvate, un cadru national clar pentru tratament si monitorizare si date mai bune despre persoanele afectate.<\/p>\n<p style=\"text-align: justify;\">Obiectivul este o Romanie in care persoanele cu boli hepatice rare primesc diagnosticul la timp, au acces la tratamentul necesar si beneficiaza de sprijinul de care au nevoie pentru a trai cat mai bine cu afectiunea lor.<\/p>\n<p style=\"text-align: justify;\"><strong>Despre Share Experience<\/strong><\/p>\n<p style=\"text-align: justify;\">Share Experience este o serie de webinare dedicata schimbului de experienta si imbunatatirii colaborarii intre actorii implicati in diagnosticul si managementul bolilor rare. Editia din 2026 este organizata de Alianta Nationala pentru Boli Rare Romania si Asociatia Romana de Cancere Rare, cu sprijinul Ipsen, UCB, Sanofi, MSD si Johnson &amp; Johnson.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>316 pacienti cu boala Wilson se aflau, in 2023, in evidentele Asociatiei \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d, date confirmate, potrivit organizatiei, si de Casa Nationala de Asigurari de Sanatate. Numarul [&hellip;]<\/p>\n","protected":false},"author":6,"featured_media":19158,"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-19156","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 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Asociatia \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d a fost infiintata in 2023<\/title>\n<meta name=\"description\" content=\"Boala Wilson este o afectiune genetica rara care impiedica organismul sa elimine in mod corespunzator excesul de cupru\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/jurmed.ro\/medici\/peste-300-de-pacienti-cu-boala-wilson-cer-acces-la-tratament-si-diagnostic-mai-rapid\/\" \/>\n<meta property=\"og:locale\" content=\"ro_RO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Asociatia \u201eImpreuna Luptam Impotriva Bolii Wilson\u201d a fost infiintata in 2023\" \/>\n<meta property=\"og:description\" content=\"Boala Wilson este o afectiune genetica rara care impiedica organismul sa elimine in mod corespunzator excesul de cupru\" \/>\n<meta property=\"og:url\" content=\"https:\/\/jurmed.ro\/medici\/peste-300-de-pacienti-cu-boala-wilson-cer-acces-la-tratament-si-diagnostic-mai-rapid\/\" \/>\n<meta property=\"og:site_name\" content=\"Jurmed - 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