{"id":40286,"date":"2025-02-27T09:13:37","date_gmt":"2025-02-27T09:13:37","guid":{"rendered":"https:\/\/www.theconservative.online\/strategiile-irlandei-privind-bolile-rare"},"modified":"2025-02-27T09:13:37","modified_gmt":"2025-02-27T09:13:37","slug":"strategiile-irlandei-privind-bolile-rare","status":"publish","type":"post","link":"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare","title":{"rendered":"Strategiile Irlandei privind bolile rare"},"content":{"rendered":"
\u00cen multe privin\u021be, termenul „boli rare” este o denumire improprie, deoarece nu reflect\u0103 \u00een mod adecvat prevalen\u021ba afec\u021biunilor clasificate la aceast\u0103 rubric\u0103.<\/div>\n
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De exemplu, de\u0219i o boal\u0103 rar\u0103 este definit\u0103 \u00een UE ca fiind o boal\u0103 sau o tulburare care afecteaz\u0103 mai pu\u021bin de 5 din 10 000 din popula\u021bia european\u0103, se estimeaz\u0103 c\u0103 exist\u0103 \u00eentre 5 000 \u0219i 8 000 de boli rare distincte, care afecteaz\u0103 mai mult de 6 %-8 % din popula\u021bia UE.<\/div>\n
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\u00cen termeni reali, acest lucru \u00eenseamn\u0103 c\u0103 \u00eentre 27 \u0219i 36 de milioane de persoane din UE sunt afectate de boli rare.<\/div>\n
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Conform Oficiului na\u021bional pentru boli rare (National Rare Diseases Office – NRDO), \u00een Irlanda se estimeaz\u0103 c\u0103 300 000 de persoane vor dezvolta o boal\u0103 rar\u0103 la un moment dat \u00een via\u021b\u0103. \u00centr-adev\u0103r, \u00een politica irlandez\u0103 \u00een domeniul s\u0103n\u0103t\u0103\u021bii se recunoa\u0219te de mult timp c\u0103, de\u0219i anumite grupuri de boli rare pot fi incluse \u00een modele de comisionare bine stabilite (de exemplu, epilepsia rar\u0103 \u00een contextul programelor clinice de neurologie\/epilepsie), „cohortele de grupuri de afec\u021biuni ultra-rare au adesea o vizibilitate redus\u0103, cu sisteme na\u021bionale de codificare \u0219i identificare foarte slabe \u0219i sunt subfinan\u021bate \u0219i subfinan\u021bate la nivel na\u021bional”. <\/div>\n
Aceasta nu \u00eenseamn\u0103 c\u0103 re\u021beaua complex\u0103 de probleme legate de bolile rare nu a beneficiat de o aten\u021bie politic\u0103 semnificativ\u0103. Totu\u0219i, din punct de vedere istoric, procesul a fost condus \u00een mare m\u0103sur\u0103 de organiza\u021bii de campanie, cum ar fi The Genetic and Rare Disorders Organisation (GRDO). Aceast\u0103 organiza\u021bie neguvernamental\u0103 este \u00een prezent cunoscut\u0103 sub numele de Rare Diseases Ireland \u0219i a pus efectiv bazele unei ac\u021biuni organizate de sensibilizare a pacien\u021bilor \u00een Irlanda cu privire la aceast\u0103 problem\u0103. <\/div>\n
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GRDO, a\u0219a cum era cunoscut atunci, a fost \u00eenfiin\u021bat \u00een 1988. Prima sa realizare a fost achizi\u021bia cu succes a unui centru na\u021bional dedicat geneticii medicale (NMCG), care a fost \u00eenfiin\u021bat \u00een 1994 la Our Lady’s Children’s Hospital din Dublin. Acest centru a devenit principalul centru irlandez pentru diagnosticarea \u0219i gestionarea bolilor genetice rare, marc\u00e2nd primul r\u0103spuns institu\u021bional major al Irlandei la bolile rare. <\/div>\n
Ulterior, Irlanda s-a al\u0103turat EURORDIS (Organiza\u021bia European\u0103 pentru Boli Rare), un pas care a conectat avoca\u021bii irlandezi cu o re\u021bea european\u0103 mai larg\u0103, influen\u021b\u00e2nd politicile UE, cum ar fi Regulamentul privind produsele medicamentoase orfane din 1999. Acest lucru a extins rapid accesul Irlandei la expertiza interna\u021bional\u0103 \u0219i la resursele de advocacy. <\/div>\n
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\u00cen ianuarie 2011, a avut loc o conferin\u021b\u0103 na\u021bional\u0103 la nivel \u00eenalt \u00een Irlanda, \u00een colaborare cu EUROPLAN, care a reunit pacien\u021bi, organiza\u021bii ale pacien\u021bilor \u0219i profesioni\u0219ti din domeniul s\u0103n\u0103t\u0103\u021bii. Conferin\u021ba a fost remarcabil\u0103 deoarece, de\u0219i a recunoscut pa\u0219ii pozitivi care au fost f\u0103cu\u021bi, a solicitat, de asemenea, \u00een mod explicit o reform\u0103 major\u0103 a serviciului de s\u0103n\u0103tate irlandez pentru a se asigura c\u0103 acesta este capabil s\u0103 ofere un acces mai bun la servicii de \u00eenalt\u0103 calitate legate de bolile rare. <\/div>\n
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\u00cent\u00e2lnirea de la Farmleigh a fost urmat\u0103, \u00een 2012, de comandarea de c\u0103tre Health Service Executive (HSE) a consult\u0103rii publice online „Have Your Say”.<\/div>\n
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Punctele-cheie care au reie\u0219it din procesul de consultare au inclus urm\u0103toarele: diagnostice \u00eent\u00e2rziate, dificult\u0103\u021bi pentru medicii generali\u0219ti \u00een ceea ce prive\u0219te accesul la informa\u021bii de calitate, lipsa serviciilor de diagnostic adecvate \u0219i lipsa unui sistem de revizuire a procesului de diagnosticare. Lipsa de con\u0219tientizare a bolilor rare, evident\u0103 la toate nivelurile sistemului de s\u0103n\u0103tate, precum \u0219i \u00een ceea ce prive\u0219te accesul la serviciile \u0219i drepturile publice \u0219i private, at\u00e2t \u00een mediul clinic, c\u00e2t \u0219i \u00een afara acestuia. Un acces mai bun la \u00eengrijirea specializat\u0103 \u0219i \u00eembun\u0103t\u0103\u021birea diagnostic\u0103rii exacte \u0219i \u00een timp util au fost considerate domeniile care ar putea aduce cele mai multe beneficii pacien\u021bilor cu boli rare din Irlanda. <\/div>\n
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Cu toate acestea, abia \u00een 2013 a ap\u0103rut \u00een Irlanda un cadru na\u021bional formal pentru bolile rare, odat\u0103 cu instituirea Programului clinic na\u021bional pentru bolile rare al HSE. Acest program a avut ca scop \u00eembun\u0103t\u0103\u021birea coordon\u0103rii \u0219i furniz\u0103rii de \u00eengrijire pentru pacien\u021bii cu boli rare din Irlanda. O recomandare extrem de important\u0103 care a fost prezentat\u0103 de Programul clinic na\u021bional a fost necesitatea urgent\u0103 de a se asigura c\u0103 registrele specifice bolilor, at\u00e2t cele existente, c\u00e2t \u0219i cele \u00een curs de dezvoltare, ar trebui s\u0103 continue p\u00e2n\u0103 c\u00e2nd strategia de e-s\u0103n\u0103tate este complet implementat\u0103 \u00een toate domeniile asisten\u021bei medicale din Irlanda. De asemenea, s-a recomandat insistent ca aceste registre s\u0103 fie preg\u0103tite pentru viitor \u00een ceea ce prive\u0219te tehnologia \u0219i evolu\u021bia demografic\u0103 \u0219i s\u0103 fie integrate la nivel na\u021bional \u0219i \u00een cadrul registrelor europene, inclusiv \u00een cadrul registrelor ERN. <\/div>\n
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Ac\u021biunile \u00eentreprinse de guvernul irlandez au continuat \u00een 2014 prin lansarea primului plan na\u021bional al Irlandei privind bolile rare 2014-2018.<\/div>\n
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Planul a inclus 46 de recomand\u0103ri cuprinz\u0103toare axate pe diagnostic, c\u0103i de tratament \u0219i colaborare european\u0103 (de exemplu, re\u021bele europene de referin\u021b\u0103 – ERN). Planul a furnizat, de asemenea, o foaie de parcurs strategic\u0103 pentru \u00eenfiin\u021barea Oficiului Na\u021bional pentru Boli Rare (NRDO), care a fost \u00een cele din urm\u0103 \u00eenfiin\u021bat \u00een 2015. <\/div>\n
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NRDO \u00ee\u0219i enumer\u0103 rolul central ca fiind „centrul de coordonare” \u0219i principalul contact \u0219i motor al HSE pentru ini\u021biativele \u0219i proiectele privind bolile rare din Irlanda, \u00een conformitate cu Planul na\u021bional privind bolile rare.<\/div>\n
Acesta afirm\u0103, de asemenea, c\u0103 scopul s\u0103u este de a sprijini persoanele cu afec\u021biuni rare \u0219i familiile acestora prin \u00eembun\u0103t\u0103\u021birea accesibilit\u0103\u021bii \u0219i calit\u0103\u021bii serviciilor, \u00een special printr-o serie de servicii, inclusiv furnizarea de informa\u021bii bazate pe dovezi \u0219i ac\u021bion\u00e2nd ca gazd\u0103 \u0219i curator Orphanet Ireland.<\/div>\n
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Importan\u021ba Orphanet poate fi supraestimat\u0103. \u00cenfiin\u021bat \u00een Fran\u021ba \u00een 1997, acesta a devenit principala surs\u0103 de referin\u021b\u0103 standard de informa\u021bii privind bolile rare. Ini\u021biativa a devenit un proiect european \u00een 2000 \u0219i este sus\u021binut\u0103 \u00een prezent de subven\u021bii din partea Comisiei Europene. Aceasta cuprinde \u00een prezent o re\u021bea de 41 de \u021b\u0103ri din Europa \u0219i din \u00eentreaga lume. <\/div>\n
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Ca parte a \u00eencerc\u0103rilor Irlandei de a valorifica progresele realizate, HSE a publicat un Model de \u00eengrijire pentru bolile rare \u00een 2019. \u00cen esen\u021b\u0103, Modelul de \u00eengrijire a subliniat cele mai bune practici pentru furnizarea de \u00eengrijire integrat\u0103 pacien\u021bilor cu boli rare, lu\u00e2nd \u00een acela\u0219i timp m\u0103suri semnificative pentru a consolida punerea \u00een aplicare practic\u0103 a planului 2014-2018. <\/div>\n
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Unul dintre cele mai importante elemente ale modelului de \u00eengrijire a fost aten\u021bia acordat\u0103 necesit\u0103\u021bii exprese de a furniza un plan de tranzi\u021bie pentru copiii cu boli rare c\u0103tre servicii multidisciplinare \u0219i specifice pentru adul\u021bi.<\/div>\n
\u00cen 2024 \u0219i 2025 au avut loc o serie de evolu\u021bii pozitive suplimentare \u00een ceea ce prive\u0219te gestionarea bolilor rare \u0219i serviciile pentru care Irlanda poate fi l\u0103udat\u0103. Acestea includ prima referire la bolile rare \u00eentr-un buget guvernamental. \u00cen bugetul 2025, 1,5 milioane EUR au fost alocate bolilor rare (\u00een cre\u0219tere la 3 milioane EUR \u00een 2026). <\/div>\n
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\u00cen plus, o sum\u0103 suplimentar\u0103 de 5 milioane EUR a fost alocat\u0103 bolilor rare \u00eenainte de alegerile generale din 2024. Astfel, serviciile de boli rare au trecut de la o situa\u021bie \u00een care nu existau investi\u021bii rezervate pentru bolile rare la un buget total anual recurent de 8 milioane EUR. <\/div>\n
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Exist\u0103, de asemenea, multe a\u0219tept\u0103ri cu privire la finalizarea unei noi strategii na\u021bionale privind bolile rare \u00een 2025. Grupurile de advocacy care reprezint\u0103 persoanele care tr\u0103iesc cu boli rare au declarat c\u0103 sunt \u00eencrez\u0103toare c\u0103 noua strategie \u0219i noul plan de punere \u00een aplicare vor oferi foaia de parcurs care ne va permite s\u0103 implement\u0103m noi schimb\u0103ri pozitive; <\/div>\n
<\/div>\n
Cu toate acestea, a existat, de asemenea, o frustrare generalizat\u0103 \u00een cadrul comunit\u0103\u021bii de sus\u021binere a bolilor rare. Aceasta s-a concentrat asupra \u00eent\u00e2rzierilor \u00een furnizarea a \u0219ase asocia\u021bi de resurse genomice care s\u0103 fie angaja\u021bi la Departamentul de genetic\u0103 clinic\u0103 de la CHI, Crumlin. <\/div>\n
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Aceast\u0103 situa\u021bie a ap\u0103rut \u00een parte din cauza moratoriului de recrutare impus de directorul general al HSE cu privire la angajarea \u00een func\u021bii administrative.<\/div>\n
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Putem spune c\u0103, de\u0219i Irlanda a demonstrat o concentrare semnificativ\u0103 \u0219i hot\u0103r\u00e2t\u0103 a politicii de s\u0103n\u0103tate asupra problemelor legate de diagnosticarea \u0219i con\u0219tientizarea bolilor rare, exist\u0103 \u00eenc\u0103 lacune clare \u00een ceea ce prive\u0219te furnizarea de personal specializat. \u00cen plus, provoc\u0103rile legate de \u00eengrijirea bolilor rare \u00een Irlanda se extind dincolo de constr\u00e2ngerile legate de finan\u021bare \u0219i personal. Exist\u0103 \u00een continuare o nevoie critic\u0103 de o mai bun\u0103 integrare a expertizei \u00een domeniul bolilor rare \u00een cadrul sistemului mai larg de asisten\u021b\u0103 medical\u0103, asigur\u00e2ndu-se c\u0103 profesioni\u0219tii din asisten\u021ba medical\u0103 primar\u0103 sunt preg\u0103ti\u021bi s\u0103 identifice \u0219i s\u0103 trateze bolile rare la timp. \u00cen plus, accesul la tratamente de ultim\u0103 genera\u021bie – \u00een special la terapiile genice – r\u0103m\u00e2ne o problem\u0103 controversat\u0103, procesele lente de aprobare \u0219i costurile ridicate \u00eent\u00e2rziind adesea interven\u021biile care schimb\u0103 vie\u021bi. De\u0219i aloc\u0103rile bugetare recente reprezint\u0103 un progres, sustenabilitatea pe termen lung va necesita reforme structurale, o finan\u021bare sporit\u0103 a cercet\u0103rii \u0219i un r\u0103spuns mai agil la peisajul \u00een continu\u0103 evolu\u021bie al tratamentului \u0219i gestion\u0103rii bolilor rare. <\/div>\n","protected":false},"excerpt":{"rendered":"

\u00cen multe privin\u021be, termenul „boli rare” este o denumire improprie, deoarece nu reflect\u0103 \u00een mod adecvat prevalen\u021ba afec\u021biunilor clasificate la aceast\u0103 rubric\u0103. De exemplu, de\u0219i o boal\u0103 rar\u0103 este definit\u0103 \u00een UE ca fiind o boal\u0103 sau o tulburare care afecteaz\u0103 mai pu\u021bin de 5 din 10 000 din popula\u021bia european\u0103, se estimeaz\u0103 c\u0103 exist\u0103 […]<\/p>\n","protected":false},"author":50,"featured_media":40243,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[200],"tags":[],"editorial-positions":[],"regions":[],"types":[456],"class_list":["post-40286","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sanatate","types-opinion-ro"],"yoast_head":"\nStrategiile Irlandei privind bolile rare - The Conservative<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\" \/>\n<meta property=\"og:locale\" content=\"ro_RO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Strategiile Irlandei privind bolile rare - The Conservative\" \/>\n<meta property=\"og:description\" content=\"\u00cen multe privin\u021be, termenul „boli rare” este o denumire improprie, deoarece nu reflect\u0103 \u00een mod adecvat prevalen\u021ba afec\u021biunilor clasificate la aceast\u0103 rubric\u0103. De exemplu, de\u0219i o boal\u0103 rar\u0103 este definit\u0103 \u00een UE ca fiind o boal\u0103 sau o tulburare care afecteaz\u0103 mai pu\u021bin de 5 din 10 000 din popula\u021bia european\u0103, se estimeaz\u0103 c\u0103 exist\u0103 […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\" \/>\n<meta property=\"og:site_name\" content=\"The Conservative\" \/>\n<meta property=\"article:published_time\" content=\"2025-02-27T09:13:37+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.theconservative.online\/wp-content\/uploads\/2025\/02\/Shutterstock_2476792285.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"960\" \/>\n\t<meta property=\"og:image:height\" content=\"540\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Martin Lynch\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Scris de\" \/>\n\t<meta name=\"twitter:data1\" content=\"Martin Lynch\" \/>\n\t<meta name=\"twitter:label2\" content=\"Timp estimat pentru citire\" \/>\n\t<meta name=\"twitter:data2\" content=\"8 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\"},\"author\":{\"name\":\"Martin Lynch\",\"@id\":\"https:\/\/www.theconservative.online\/ro#\/schema\/person\/c5528d318c4dd8f2a686334550b407bc\"},\"headline\":\"Strategiile Irlandei privind bolile rare\",\"datePublished\":\"2025-02-27T09:13:37+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\"},\"wordCount\":1603,\"image\":{\"@id\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.theconservative.online\/wp-content\/uploads\/2025\/02\/Shutterstock_2476792285.jpg\",\"articleSection\":[\"S\u0103n\u0103tate\"],\"inLanguage\":\"ro-RO\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\",\"url\":\"https:\/\/www.theconservative.online\/ro\/strategiile-irlandei-privind-bolile-rare\",\"name\":\"Strategiile Irlandei privind bolile rare - 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