{"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\/hi\/ressources\/","title":{"rendered":"Ressources"},"content":{"rendered":"

[et_pb_section fb_built=”1″ _builder_version=”4.27.6″ _module_preset=”default” background_image=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png” background_position=”bottom_center” background_vertical_offset=”20%” custom_padding=”15px||15px||true|false” background_last_edited=”on|desktop” background_position_tablet=”bottom_right” background_position_phone=”center_right” global_module=”28071″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.4″ _dynamic_attributes=”title” _module_preset=”default” title_font=”–et_global_heading_font|300|||||||” title_text_color=”#FFFFFF” title_font_size=”40px” custom_margin=”||3px|||” title_font_size_tablet=”” title_font_size_phone=”25px” title_font_size_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_heading][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/fr\/contactez-nous\/” button_text=”Contactez nous” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_size=”15px” button_text_color=”#C02E43″ button_bg_color=”rgba(10,22,64,0.53)” button_border_width=”0px” button_icon=”||divi||400″ button_icon_color=”#C02E43″ button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}” filter_opacity__hover_enabled=”on|hover” filter_opacity__hover=”70%”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”section” _builder_version=”4.16″ global_colors_info=”{}”][et_pb_row admin_label=”rang\u00e9e” _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text admin_label=”Text” _builder_version=”4.27.5″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” custom_margin=”||17px|||” global_colors_info=”{}”]<\/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 “NCCN guidelines” (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=”https:\/\/www.erdheim-chester.org\/fr\/demandez-une-brochure\/” button_text=”Demandez une brochure” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”rgba(200,200,200,0.3)” global_colors_info=”{}”][et_pb_row module_class=”resource-buttons” _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”||0px||false|false” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][et_pb_button button_url=”#medication” button_text=”Aide \u00e0 la prise de m\u00e9dicaments” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}” button_bg_color__hover_enabled=”on|hover” button_bg_color__hover=”RGBA(255,255,255,0)” button_bg_enable_color__hover=”on”][\/et_pb_button][et_pb_button button_url=”#insurance” button_text=”Assurance et assistance financi\u00e8re” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”#travel” button_text=”Assistance voyage” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”#partner” button_text=”Organisations partenaires de d\u00e9fense des droits” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”#general” button_text=”Ressources g\u00e9n\u00e9rales” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”#depression” button_text=”Aide \u00e0 la d\u00e9pression et \u00e0 l'anxi\u00e9t\u00e9” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_url=”#apv” button_text=”Ressources APV-D” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||10px||false|false” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”medication” module_class=”blog-grid” _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”10px||||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/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

[\/et_pb_text][dpdfg_filtergrid include_categories=”296″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” custom_content_container=”off” show_filters=”off” filter_layout=”select” show_pagination=”off” items_width=”24%” module_class=”my-dfg” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” dpdfg_filters_active_text_color=”#C02E43″ custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”insurance” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

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

[\/et_pb_text][dpdfg_filtergrid include_categories=”297″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”travel” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

Assistance voyage<\/h3>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=”298″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”partner” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

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=”299″ post_number=”100″ order=”ASC” orderby=”title” thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”general” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

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

[\/et_pb_text][dpdfg_filtergrid include_categories=”300″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”depression” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

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

[\/et_pb_text][dpdfg_filtergrid include_categories=”4828″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=”apv” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||17px|||” global_colors_info=”{}”]<\/p>\n

Ressources APV-D<\/h3>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=”4829″ thumbnail_action=”none” show_thumbnail=”off” use_overlay=”off” show_post_meta=”off” show_content=”on” content_length=”full” read_more=”on” read_more_text=”Voir” show_filters=”off” show_pagination=”off” items_width=”24%” module_class=”blog-grid” _builder_version=”4.27.4″ _module_preset=”default” dpdfg_entry_title_text_align=”left” dpdfg_entry_summary_text_align=”left” custom_read_more_button=”on” read_more_button_text_size=”13px” read_more_button_text_color=”#35A4BB” read_more_button_bg_color=”rgba(53,164,187,0.15)” read_more_button_icon=”$||divi||400″ read_more_button_on_hover=”off” read_more_button_alignment=”left” read_more_button_custom_padding=”0px|34px|0px|0px|true|false” border_width_all=”0px” global_colors_info=”{}” read_more_button_text_color__hover=”#FFFFFF” read_more_button_text_color__hover_enabled=”on|hover” read_more_button_bg_color__hover=”#35A4BB” read_more_button_bg_color__hover_enabled=”on|hover”][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

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":"","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\/hi\/wp-json\/wp\/v2\/pages\/52303","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=52303"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/pages\/52303\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=52303"}],"curies":[{"name":"\u0921\u092c\u094d\u0932\u094d\u092f\u0942\u092a\u0940","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}