{"id":5486,"date":"2022-07-13T14:45:36","date_gmt":"2022-07-13T12:45:36","guid":{"rendered":"https:\/\/reseau-amylose.org\/jesuissoignant\/?page_id=5486"},"modified":"2026-06-12T16:40:24","modified_gmt":"2026-06-12T14:40:24","slug":"protocole-amylo-pep-education-therapeutique","status":"publish","type":"page","link":"https:\/\/reseau-amylose.org\/jesuissoignant\/protocole-amylo-pep-education-therapeutique\/","title":{"rendered":"Programme AMYLO-PEP"},"content":{"rendered":"\t\t
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Programme d'\u00e9ducation th\u00e9rapeutique du patient AMYLO-PEP<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Ateliers collectifs \u00b7 Accr\u00e9dit\u00e9 ARS \u00b7 R\u00e9seau Amylose \u00b7 Mis \u00e0 jour 2026<\/h2>\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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Qu'est-ce que le programme AMYLO-PEP ?\n<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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L’amylose, sa gestion ainsi que celle des traitements au quotidien, impactent l’autonomie et modifient les besoins des patients. Afin de les aider \u00e0 s’adapter \u00e0 ces changements, de r\u00e9pondre \u00e0 leurs besoins au quotidien et de leur permettre de se r\u00e9approprier leurs soins, le programme d’\u00e9ducation th\u00e9rapeutique du patient AMYLO-PEP (Amylo\u00efdosis Patient Education Program), ou ateliers collectifs, a \u00e9t\u00e9 accr\u00e9dit\u00e9 par l’Agence R\u00e9gionale de Sant\u00e9 (ARS) et a d\u00e9but\u00e9 en 2017 sous la responsabilit\u00e9 du Docteur Soulef Guendouz.<\/p>

Ce programme est soutenu par l’Association Fran\u00e7aise des patients contre l’Amylose (AFCA). En pr\u00e9venant les complications et en proposant aux patients d’\u00eatre acteurs de leur sant\u00e9, les ateliers visent \u00e0 diminuer l’impact de la maladie sur leur qualit\u00e9 de vie et celle de leur famille et de leurs aidants, ainsi qu’\u00e0 am\u00e9liorer ou maintenir leur autonomie.<\/p>

Julie Pompougnac et Soulef Guendouz Coordinatrices Amylo -PEP<\/h6>
T\u00e9l : 01 49 81 22 53<\/h6>
amylo.pep@gmail.com<\/h6>\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
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Points cl\u00e9s pour les professionnels de sant\u00e9<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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AMYLO-PEP est ouvert \u00e0\u00a0toutes les formes d’amylose<\/strong>\u00a0: amylose AL, amylose h\u00e9r\u00e9ditaire (ATTR h\u00e9r\u00e9ditaire) et amylose ATTR s\u00e9nile (sauvage). Le programme s’adresse aussi \u00e0 la famille et aux aidants des patients.<\/p>

Les patients peuvent y participer pendant leur hospitalisation ou en se rendant au centre de r\u00e9f\u00e9rence sur simple demande aupr\u00e8s des coordinatrices.<\/p>

Le programme est accr\u00e9dit\u00e9 par l’ARS, un gage de qualit\u00e9 et de cadre m\u00e9thodologique pour l’\u00e9ducation th\u00e9rapeutique, conforme aux exigences r\u00e9glementaires fran\u00e7aises.<\/p>\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

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Pour qui ?\n<\/h2>\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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Patients atteints d'amylose<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Toutes formes : amylose AL, amylose h\u00e9r\u00e9ditaire, amylose ATTR s\u00e9nile (TTR sauvage). Quel que soit le stade de la maladie.<\/p><\/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

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Famille et aidants<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Les proches et aidants des patients sont \u00e9galement concern\u00e9s par le programme, accompagnement global de l’entourage.<\/p><\/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

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Comment y acc\u00e9der ?\n<\/h2>\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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Pendant l'hospitalisation<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Les patients hospitalis\u00e9s au centre de r\u00e9f\u00e9rence peuvent participer directement aux ateliers propos\u00e9s sur place.<\/div><\/div><\/div>
\u00a0<\/div><\/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
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Sur simple demande<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Les patients peuvent se rendre au centre de r\u00e9f\u00e9rence pour participer aux ateliers, sur demande aupr\u00e8s des coordinatrices<\/div><\/div><\/div>
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Contact direct<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Julie Pompougnac et Dr Soulef Guendouz, coordinatrices AMYLO-PEP \u2014 01 49 81 22 53 \u2014 amylo.pep@gmail.com<\/div><\/div><\/div><\/div><\/div><\/div><\/div>
\u00a0<\/div><\/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
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Le programme Amylo-PEP propose des ateliers d\u2019\u00e9ducation th\u00e9rapeutique destin\u00e9s aux patients atteints d\u2019amylose ainsi qu\u2019\u00e0 leur famille et leurs aidants, quel que soit le type d\u2019amylose (AL, h\u00e9r\u00e9ditaire, TTR s\u00e9nile).<\/span><\/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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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"\u00e9ducation\t\t\t\t\t\t\t\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
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\u00a0<\/p>

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\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tT\u00e9l\u00e9chargez le triptyque pour vos patients \"Am\u00e9lioration de la qualit\u00e9 de vie AMYLO-PEP\"<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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
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Pour consulter le Programme d'\u00c9ducation th\u00e9rapeutique du patient AMYLO-PEP \u00e0 venir : <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tCliquez ici<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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":"

Programme d’\u00e9ducation th\u00e9rapeutique du patient AMYLO-PEP Ateliers collectifs \u00b7 Accr\u00e9dit\u00e9 ARS \u00b7 R\u00e9seau Amylose \u00b7 Mis \u00e0 jour 2026 Qu’est-ce que le programme AMYLO-PEP ? L’amylose, sa gestion ainsi que celle des traitements au quotidien, impactent l’autonomie et modifient les besoins des patients. Afin de les aider \u00e0 s’adapter \u00e0 ces changements, de r\u00e9pondre \u00e0 […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"categories":[],"tags":[],"class_list":["post-5486","page","type-page","status-publish","hentry"],"yoast_head":"\nProgramme AMYLO-PEP - R\u00e9seau Amylose<\/title>\n<meta name=\"description\" content=\"\u00c9ducation th\u00e9rapeutique du patient (ETP) - Le R\u00e9seau Amylose propose des ateliers qualit\u00e9 de vie - AMYLO-PEP\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/reseau-amylose.org\/jesuissoignant\/protocole-amylo-pep-education-therapeutique\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Programme AMYLO-PEP - 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