{"id":14092,"date":"2022-10-24T09:29:24","date_gmt":"2022-10-24T09:29:24","guid":{"rendered":"https:\/\/jurmed.ro\/medici\/?p=14092"},"modified":"2022-10-24T09:29:24","modified_gmt":"2022-10-24T09:29:24","slug":"in-tratamentul-bolilor-rare-si-cancerelor-rare-instruirea-permanenta-a-specialistilor-este-esentiala","status":"publish","type":"post","link":"https:\/\/jurmed.ro\/medici\/in-tratamentul-bolilor-rare-si-cancerelor-rare-instruirea-permanenta-a-specialistilor-este-esentiala\/","title":{"rendered":"In tratamentul bolilor rare si cancerelor rare, instruirea permanenta a specialistilor este esentiala"},"content":{"rendered":"

Instruirea continua a specialistilor implicati in diagnosticarea si managementul bolilor rare este esentiala. Cu cat mai multi specialisti vor afla despre nevoile complexe ale acestor persoane, cu atat mai mare va fi capacitatea sistemului de sanatate de a se implica si de a oferi servicii eficiente si de calitate.<\/p>\n

\u201eEducatia medicala continua pentru specialistii din domeniul bolilor rare este absolut necesara pentru ca totul evolueaza<\/em>: <\/em>evolueaza cunostintele, apar tehnologii noi, metode noi de diagnosticare, de codificare, registre electronice ale pacientilor. Este nevoie de foarte multa comunicare si formare profesionala”, <\/em>a declarat azi Dorica Dan, presedinta Aliantei Nationale pentru Boli Rare Romania si Asociatiei Romane de Cancere Rare in cadrul webinarului Share Experience.<\/p>\n

Colaborarea multidisciplinara a medicilor asigura un management mai bun al bolii pacientilor, deoarece diagnosticarea precoce de precizie poate imbunatati calitatea vietii acestor pacienti. Introducerea unei noi modalitati de lucru ce a pus pacientul in centrul atentiei echipei de specialisti a dus la rezultate foarte bune in diagnosticarea si tratarea bolilor rare. Este nevoie de continuarea acestor eforturi si de infiintarea unor comisii locale pentru pacientii cu boli rare.<\/p>\n

,,Comunicarea si increderea sunt doua elemente esentiale in relatia dintre medic si pacient. Numai printr-o buna comunicare se poate stabili diagnosticul si tratamentul potrivit. Responsabilitatea imbunatatirii comunicarii revine atat medicului, cat si pacientului. Au fost facuti pasi importanti in aceasta directie si vom continua aceste demersuri si in viitor prin campanii educationale.”, <\/em>a declarat azi Luminita Valcea, Coalitia Organizatiilor Pacientilor cu Afectiuni Cronice din Romania, in cadrul webinarului Share Experience.<\/p>\n

\u201eEste foarte important sa avem un program national prin care sa stim cu siguranta cati pacienti cu boli rare avem, ce nevoi au si ce costuri implica tratatarea acestora.”, <\/em>a declarat dr. Ioana Streata, medic genetician la Centrul Regional de Genetica Medicala din Dolj.<\/p>\n

In Romania nu exista registre nationale de pacienti, dar se estimeaza ca aproape 25000 de oameni sunt diagnosticati cu cancere rare in fiecare an si ca exista peste 1.000.000 de pacienti cu boli rare, 90% dintre acestea fiind nediagnosticate sau diagnosticate gresit.<\/p>\n

\u201eScopul asistentei medicale comunitare consta in imbunatatirea starii de sanatate a populatiei prin asigurarea accesului la servicii de sanatate a tututor persoanelor din fiecare comunitate, indiferent de statutul socio-economic, nivelul de educatie, amplasarea in mediul rural sau urban sau distanta fata de furnizorul de servicii medicale. Asistenta medicala comunitara este coordonata tehnic si metodologic de catre Ministerul Sanatati si lucram constant pentru dezvoltarea resursei umane si gasirea surselor de finantare pentru educarea acestora.”, <\/em>a declarat Lidia Onofrei – Ministerul Sanatatii.<\/p>\n

Este foarte importanta conectarea grupurilor de furnizori comunitari cu specialistii din centrele de expertiza astfel incat sa se formeze o colaborare in timp real. ECHO este un model colaborativ de educatie medicala care isi propune sa dezvolte capacitatea fortei de munca in zonele rurale si defavorizate, lansat in anul 2003. \u201eObiectivul proiectului nostru a fost instruirea unui numar de 120 de persoane in management de caz pentru bolile rare intr-o perioada de 8 luni si crearea a 2 retele de suport in comunitate si actualizarea hartii serviciilor existente in judetele Teleorman si Gorj.<\/em> Asistentul medical comunitar nu este doar un asistent, este o punte de legatura intre pacient si sistemul ce promite o ingrijire integrata, iar calitatea acestei ingrijiri influenteaza direct calitatea vietii beneficiarului.”, <\/em>a declarat declarat Ramona Mocutiu, asistent social in cadrul Centrului NoRo.<\/p>\n

In Europa, o boala este considerata rara cand afecteaza mai putin de 1 din 2000 de indivizi, iar in SUA o boala este considerata rara atunci cand afecteaza mai putin de 200000 de indivizi intr-un interval de timp.<\/p>\n

80% dintre bolile rare au cauza genetica, in timp ce altele sunt rezultatul infectiilor (bacteriene sau virale), alergii si cauze de mediu sau sunt degenerative si proliferative.<\/p>\n

O boala rara poate fi diagnosticata in orice moment al vietii, dar 75% dintre aceste boli incep in perioada de sugar, copil.<\/p>\n

Webinarul \u201eInstruirea continua a specialistilor in bolile rare si cancerele rare\u201d<\/a><\/span> face parte dintr-o serie de sase webinarii care vor avea loc pana la finalul anului, reunite sub conceptul \u201eShare Experience 2022\u201d.<\/p>\n

\u201eShare Experience 2022\u201d este un proiect organizat de Alianta Nationala pentru Boli Rare Romania si Asociatia Romana de Cancere Rare, sprijinit de Sanofi, Bristol Myers Squibb, Novartis si Janssen.<\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Instruirea continua a specialistilor implicati in diagnosticarea si managementul bolilor rare este esentiala. 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