{"id":52303,"date":"2015-09-09T15:22:45","date_gmt":"2015-09-09T20:22:45","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ressources\/"},"modified":"2026-03-24T10:14:04","modified_gmt":"2026-03-24T15:14:04","slug":"ressources","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/fr\/ressources\/","title":{"rendered":"Ressources"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_image=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png\u00a0\u00bb background_position=\u00a0\u00bbbottom_center\u00a0\u00bb background_vertical_offset=\u00a0\u00bb20%\u00a0\u00bb custom_padding=\u00a0\u00bb15px||15px||true|false\u00a0\u00bb background_last_edited=\u00a0\u00bbon|desktop\u00a0\u00bb background_position_tablet=\u00a0\u00bbbottom_right\u00a0\u00bb background_position_phone=\u00a0\u00bbcenter_right\u00a0\u00bb global_module=\u00a0\u00bb28071″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_heading title=\u00a0\u00bb@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _dynamic_attributes=\u00a0\u00bbtitle\u00a0\u00bb _module_preset=\u00a0\u00bbdefault\u00a0\u00bb title_font=\u00a0\u00bb–et_global_heading_font|300|||||||\u00a0\u00bb title_text_color=\u00a0\u00bb#FFFFFF\u00a0\u00bb title_font_size=\u00a0\u00bb40px\u00a0\u00bb custom_margin=\u00a0\u00bb||3px|||\u00a0\u00bb title_font_size_tablet=\u00a0\u00bb\u00a0\u00bb title_font_size_phone=\u00a0\u00bb25px\u00a0\u00bb title_font_size_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_heading][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/fr\/contactez-nous\/\u00a0\u00bb button_text=\u00a0\u00bbContactez nous\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb15px\u00a0\u00bb button_text_color=\u00a0\u00bb#C02E43″ button_bg_color=\u00a0\u00bbrgba(10,22,64,0.53)\u00a0\u00bb button_border_width=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||divi||400″ button_icon_color=\u00a0\u00bb#C02E43″ button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb filter_opacity__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb filter_opacity__hover=\u00a0\u00bb70%\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ admin_label=\u00a0\u00bbsection\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row admin_label=\u00a0\u00bbrang\u00e9e\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text admin_label=\u00a0\u00bbText\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.5″ background_size=\u00a0\u00bbinitial\u00a0\u00bb background_position=\u00a0\u00bbtop_left\u00a0\u00bb background_repeat=\u00a0\u00bbrepeat\u00a0\u00bb custom_margin=\u00a0\u00bb||17px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Ressources documentaires<\/h2>\n

Ces ressources en ligne sont r\u00e9pertori\u00e9es pour fournir des conseils et des services potentiellement utiles offerts par des entreprises de soins de sant\u00e9, des organisations \u00e0 but non lucratif et d’autres groupes de d\u00e9fense.<\/p>\n

La plupart de ces services sont offerts aux personnes vivant aux \u00c9tats-Unis. Si vous connaissez d’autres ressources qui devraient \u00eatre r\u00e9pertori\u00e9es pour les \u00c9tats-Unis ou d’autres pays, veuillez contacter l’Alliance mondiale ECD. <\/p>\n

Les directives les plus r\u00e9centes des experts concernant les soins et le traitement de ECD sont disponibles sur le site Histiocytic Neoplasms – Guidelines Detail (nccn.org)<\/a>, o\u00f9 vous devrez cliquer sur \u00ab\u00a0NCCN guidelines\u00a0\u00bb (directives du NCCN). Le site n\u00e9cessite la cr\u00e9ation d’un compte gratuit pour acc\u00e9der au document, mais le jeu en vaut la chandelle. <\/p>\n

En outre, le document Survivorship Issues in Adult Patients with Histiocytic Neoplasms<\/a> fournit des conseils sur la gestion de certaines des complications et des d\u00e9fis que peut rencontrer une personne vivant avec ECD.<\/p>\n

Les experts m\u00e9dicaux en ECD de notre communaut\u00e9 ont contribu\u00e9 \u00e0 l’\u00e9laboration de deux types de brochures \u00e0 des fins d’\u00e9ducation g\u00e9n\u00e9rale et de sensibilisation. La brochure destin\u00e9e aux patients est disponible pour aider les nouveaux membres de la communaut\u00e9 \u00e0 comprendre les bases de l’ECD. La brochure m\u00e9dicale est disponible pour \u00eatre partag\u00e9e avec votre \u00e9quipe soignante ou tout professionnel de sant\u00e9. [\/et_pb_text][et_pb_button button_url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/fr\/demandez-une-brochure\/\u00a0\u00bb button_text=\u00a0\u00bbDemandez une brochure\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb background_color=\u00a0\u00bbrgba(200,200,200,0.3)\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row module_class=\u00a0\u00bbresource-buttons\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][et_pb_button button_url=\u00a0\u00bb#medication\u00a0\u00bb button_text=\u00a0\u00bbAide \u00e0 la prise de m\u00e9dicaments\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb button_bg_color__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb button_bg_color__hover=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_bg_enable_color__hover=\u00a0\u00bbon\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#insurance\u00a0\u00bb button_text=\u00a0\u00bbAssurance et assistance financi\u00e8re\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#travel\u00a0\u00bb button_text=\u00a0\u00bbAssistance voyage\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#partner\u00a0\u00bb button_text=\u00a0\u00bbOrganisations partenaires de d\u00e9fense des droits\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#general\u00a0\u00bb button_text=\u00a0\u00bbRessources g\u00e9n\u00e9rales\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#depression\u00a0\u00bb button_text=\u00a0\u00bbAide \u00e0 la d\u00e9pression et \u00e0 l'anxi\u00e9t\u00e9\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_url=\u00a0\u00bb#apv\u00a0\u00bb button_text=\u00a0\u00bbRessources APV-D\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00a0\u00bbmedication\u00a0\u00bb module_class=\u00a0\u00bbblog-grid\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb10px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||17px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Aide \u00e0 la prise de m\u00e9dicaments<\/h3>\n

Trouver une solution pour vos besoins en m\u00e9dicaments sur ordonnance peut s’av\u00e9rer difficile. La liste suivante comprend des programmes de m\u00e9dicaments qui pourraient \u00e9ventuellement vous aider \u00e0 obtenir des m\u00e9dicaments \u00e0 un prix abordable. Veuillez \u00e9galement consulter l’assistance aux payeurs sur notre page web <\/span>Introduire un recours aupr\u00e8s du payeur<\/a>.<\/span><\/p>\n

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Assurance et assistance financi\u00e8re<\/h3>\n

Une aide financi\u00e8re et m\u00e9dicale peut \u00eatre obtenue aupr\u00e8s des sources suivantes.<\/span><\/p>\n

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Assistance voyage<\/h3>\n

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Organisations partenaires de d\u00e9fense des droits<\/h3>\n

Les groupes de pression suivants s’occupent soit des maladies li\u00e9es \u00e0 l’histiocytose, soit des maladies rares en g\u00e9n\u00e9ral, et peuvent vous aider dans votre voyage avec ECD. <\/span>[\/et_pb_text][dpdfg_filtergrid include_categories=\u00a0\u00bb299″ post_number=\u00a0\u00bb100″ order=\u00a0\u00bbASC\u00a0\u00bb orderby=\u00a0\u00bbtitle\u00a0\u00bb thumbnail_action=\u00a0\u00bbnone\u00a0\u00bb show_thumbnail=\u00a0\u00bboff\u00a0\u00bb use_overlay=\u00a0\u00bboff\u00a0\u00bb show_post_meta=\u00a0\u00bboff\u00a0\u00bb show_content=\u00a0\u00bbon\u00a0\u00bb content_length=\u00a0\u00bbfull\u00a0\u00bb read_more=\u00a0\u00bbon\u00a0\u00bb read_more_text=\u00a0\u00bbVoir\u00a0\u00bb show_filters=\u00a0\u00bboff\u00a0\u00bb show_pagination=\u00a0\u00bboff\u00a0\u00bb items_width=\u00a0\u00bb24%\u00a0\u00bb module_class=\u00a0\u00bbblog-grid\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb dpdfg_entry_title_text_align=\u00a0\u00bbleft\u00a0\u00bb dpdfg_entry_summary_text_align=\u00a0\u00bbleft\u00a0\u00bb custom_read_more_button=\u00a0\u00bbon\u00a0\u00bb read_more_button_text_size=\u00a0\u00bb13px\u00a0\u00bb read_more_button_text_color=\u00a0\u00bb#35A4BB\u00a0\u00bb read_more_button_bg_color=\u00a0\u00bbrgba(53,164,187,0.15)\u00a0\u00bb read_more_button_icon=\u00a0\u00bb$||divi||400″ read_more_button_on_hover=\u00a0\u00bboff\u00a0\u00bb read_more_button_alignment=\u00a0\u00bbleft\u00a0\u00bb read_more_button_custom_padding=\u00a0\u00bb0px|34px|0px|0px|true|false\u00a0\u00bb border_width_all=\u00a0\u00bb0px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb read_more_button_text_color__hover=\u00a0\u00bb#FFFFFF\u00a0\u00bb read_more_button_text_color__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb read_more_button_bg_color__hover=\u00a0\u00bb#35A4BB\u00a0\u00bb read_more_button_bg_color__hover_enabled=\u00a0\u00bbon|hover\u00a0\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00a0\u00bbgeneral\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||17px|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Ressources g\u00e9n\u00e9rales<\/h3>\n

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Aide \u00e0 la d\u00e9pression et \u00e0 l’anxi\u00e9t\u00e9<\/h3>\n

Si vous pensez que vous risquez de vous blesser ou de blesser quelqu’un d’autre, appelez, envoyez un SMS ou chattez au 988, pour joindre un conseiller de crise \u00e0 la National Suicide and Crisis Prevention Hotline (ligne d’assistance t\u00e9l\u00e9phonique nationale pour la pr\u00e9vention du suicide et des crises). Aide 24 heures sur 24, 7 jours sur 7. 988 Lifeline<\/a><\/p>\n

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Ressources APV-D<\/h3>\n

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Ressources documentaires Ces ressources en ligne sont r\u00e9pertori\u00e9es pour fournir des conseils et des services potentiellement utiles offerts par des entreprises de soins de sant\u00e9, des organisations \u00e0 but non […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-52303","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/52303","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=52303"}],"version-history":[{"count":13,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/52303\/revisions"}],"predecessor-version":[{"id":122297,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/pages\/52303\/revisions\/122297"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=52303"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}