{"id":100,"date":"2018-12-05T13:21:09","date_gmt":"2018-12-05T13:21:09","guid":{"rendered":"http:\/\/soins.reseau-amylose.org\/?page_id=100"},"modified":"2022-04-14T08:30:21","modified_gmt":"2022-04-14T06:30:21","slug":"les-objectifs-du-centre-de-reference-national-des-amyloses-cardiaques-et-du-reseau-amylose-mondo","status":"publish","type":"page","link":"https:\/\/reseau-amylose.org\/soins\/reseau-amylose-mondor-et-centre-de-reference-national-des-amyloses-cardiaques\/les-objectifs-du-centre-de-reference-national-des-amyloses-cardiaques-et-du-reseau-amylose-mondo\/","title":{"rendered":"Les OBJECTIFS du Centre de R\u00e9f\u00e9rence National des Amyloses Cardiaques et du R\u00e9seau Amylose Mondor"},"content":{"rendered":"\t\t
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A chaque objectif.....Sa r\u00e9alisation<\/h2><\/h6>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Les OBJECTIFS du Centre de R\u00e9f\u00e9rence National des Amyloses Cardiaques et du R\u00e9seau Amylose Mondor<\/strong> <\/span><\/h6>
Le Centre de R\u00e9f\u00e9rence National des Amyloses Cardiaques et le R\u00e9seau Amylose Mondor ont plusieurs objectifs :<\/strong><\/h6>
Donner l\u2019information la plus pertinente et la plus r\u00e9cente aux malades et \u00e0 leur famille, ainsi qu\u2019aux m\u00e9decins traitants et personnel soignant\u00a0<\/em><\/h6>
Favoriser l\u2019acc\u00e8s aux soins <\/em><\/h6>
Apporter les soins adapt\u00e9s aux patients\u00a0<\/em><\/h6>
Avoir une prise en charge humaine et r\u00e9pondre \u00e0 l\u2019ensemble des interrogations des patients et de leur famille <\/em><\/h6>
Am\u00e9liorer la qualit\u00e9 de vie des patients en proposant au patient de devenir acteur de sa maladie: AmyloPEP (Amyloidosis Patient Education Program) <\/em><\/h6>
Faire avancer la recherche pour am\u00e9liorer les traitements.<\/em><\/h6>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\u00a0<\/strong><\/span><\/h6>
En d\u00e9tails :<\/strong> <\/span><\/h6>
A chaque objectif ………………………………………………………………………………………………Sa r\u00e9alisation<\/span><\/h6>
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1. Favoriser une prise en charge rapide <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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\u00d8<\/span>Voir rapidement les patients ayant une suspicion d\u2019amylose cardiaque afin d\u2019e\u0301tablir la cause de l\u2019amylose et de pre\u0301parer des examens adapte\u0301s. <\/span><\/div>\n
\u00a0<\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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2. Evaluer le patient dans son ensemble <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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\u00d8<\/span>Diffe\u0301rents types d\u2019Amylose <\/span><\/div>\n
\u00a0<\/span><\/div>\n
\u00d8<\/span>Diffe\u0301rents organes touche\u0301s <\/span><\/div>\n
\u00a0<\/span><\/div>\n
\u00d8<\/span>Diffe\u0301rents sympto\u0302mes <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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3. Informer <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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\u00d8<\/span>Donner l\u2019information de la fac\u0327on la plus pertinente aux malades et a\u0300 leur famille, ainsi qu\u2019aux me\u0301decins traitants et personnels soignants <\/span><\/div>\n
\u00a0<\/span><\/div>\n
\u00d8<\/span>Utiliser tous les types de supports (texte, internet, vide\u0301o), confe\u0301rences…etc… <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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4. Ame\u0301liorer la qualite\u0301 de vie <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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\u00d8<\/span>Proposer aux patients de devenir acteur de leur maladie. Faciliter les e\u0301changes <\/span><\/div>\n
\u00a0<\/span><\/div>\n
\u00d8<\/span>Avoir une prise en charge humaine <\/span><\/div>\n
\u00a0<\/span><\/div>\n
\u00d8<\/span>Limiter les hospitalisations avec un suivi connecte\u0301 <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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5. Faire avancer la recherche <\/span><\/div>\n<\/div><\/td>\n<\/tr>\n
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\u00d8<\/span>Sur le diagnostic pour :<\/span><\/div>\n<\/div>\n<\/div>\n
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  • Un diagnostic plus pre\u0301coce<\/span><\/li>\n \t
  • Identifier de nouveaux outils<\/span><\/li>\n\u00d8<\/span>Sur les traitements pour : <\/span>\n
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    • Ralentir ou empe\u0302cher les de\u0301po\u0302ts amyloi\u0308des <\/span><\/li>\n \t
    • Ralentir ou pre\u0301venir les sympto\u0302mes <\/span><\/li>\n \t
    • Soulager les sympto\u0302mes<\/span><\/li>\n<\/ul>\n<\/li>\n\u00d8<\/span>Sur le pronostic <\/span>\n
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      • Pour adapter le suivi a\u0300 chaque patient <\/span><\/li>\n \t
      • Pour mieux comprendre la maladie <\/span><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
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        1. Consultation SOS Amylose Coeur <\/span><\/p><\/div><\/div><\/td><\/tr>

        \u00d8<\/span>Consultation urgente pour re\u0301aliser un premier bilan (bilan sanguin…e\u0301chographie) et donner toutes les explications sur la maladie (>2h). <\/span><\/p><\/div><\/div><\/td><\/tr>

        2. Faire un bilan complet <\/span><\/p><\/div><\/div><\/td><\/tr>

        \u00d8<\/span>Nous e\u0301valuons cliniquement nos patients et utilisons un questionnaire de\u0301die\u0301 a\u0300 l\u2019amylose qui nous permettra d\u2019adapter notre prise en charge a\u0300 chacun d\u2019entre eux. <\/span><\/p><\/div><\/div><\/td><\/tr>

        3. Documents et formation <\/span><\/p><\/div><\/div><\/td><\/tr>

        \u00d8<\/span>Re\u0301daction de documents cible\u0301s (selon les atteintes) a\u0300 l\u2019usage des patients et leur famille afin d\u2019expliquer la maladie <\/span><\/p>

        \u00d8<\/span>Re\u0301daction de documents pour aider au diagnostic <\/span><\/p>

        \u00d8<\/span>Journe\u0301es de formation multidisciplinaire destine\u0301es aux me\u0301decins et personnels soignants <\/span><\/p><\/div><\/div><\/td><\/tr>

        4. Accompagnement <\/span><\/p><\/div><\/div><\/td><\/tr>

        \u00d8<\/span>AmyloPEP : Ateliers d\u2019e\u0301ducation the\u0301rapeutique
        <\/span>\u00d8<\/span>Neztoiles : Soigner dans la joie
        <\/span>\u00d8<\/span>CCICC: Centre de Coordination de l\u2019Insuffisance <\/span>Cardiaque et des Cardiomyopathies <\/span><\/p><\/div><\/div><\/td><\/tr>

        5. Protocoles et traitements <\/span><\/p><\/div><\/div><\/td><\/tr>

        \u00d8<\/span>Protocoles Amylose en cours:
        ATTRACT 2 – AmyloShiatsu – Amylodeafness – Amylocartesian <\/span><\/p>

        \u00d8<\/span>Protocoles Insuffisance Cardiaque en cours : <\/span><\/p><\/div><\/div>

        Victoria – Prove SAS – Nutricoeur –\u00a0<\/span>Galactic – Face SAS – Rex –\u00a0<\/span>Serenade –\u00a0<\/span>Safe Home –\u00a0<\/span>PHHF – Fresh<\/span><\/p>

        \u00d8<\/span>Protocoles \u00e0 venir :<\/span><\/p><\/div><\/div><\/div>

        PHRC Amylogalile\u0301o – AntiSens TTR – ANticops anti-TTR – PHRC Amylogalil\u00e9o<\/span><\/p><\/div><\/div><\/td><\/tr><\/tbody><\/table><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

        A chaque objectif…..Sa r\u00e9alisation Les OBJECTIFS du Centre de R\u00e9f\u00e9rence National des Amyloses Cardiaques et du R\u00e9seau Amylose Mondor Le Centre de R\u00e9f\u00e9rence National des Amyloses Cardiaques et le R\u00e9seau Amylose Mondor ont plusieurs objectifs : Donner l\u2019information la plus pertinente et la plus r\u00e9cente aux malades et \u00e0 leur famille, ainsi qu\u2019aux m\u00e9decins traitants […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":102,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[],"tags":[],"class_list":["post-100","page","type-page","status-publish","hentry"],"yoast_head":"\nObjectifs - Centre de R\u00e9f\u00e9rence Amyloses Cardiaques<\/title>\n<meta name=\"description\" content=\"Donner l'information - 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