{"id":107231,"date":"2026-09-18T11:10:08","date_gmt":"2026-09-18T09:10:08","guid":{"rendered":"https:\/\/u-paris.fr\/medecine\/?p=107231"},"modified":"2026-09-18T11:10:08","modified_gmt":"2026-09-18T09:10:08","slug":"etats-generaux-des-cancers-pediatriques-donner-la-parole-aux-familles-pour-faire-avancer-les-pratiques","status":"publish","type":"post","link":"https:\/\/u-paris.fr\/medecine\/etats-generaux-des-cancers-pediatriques-donner-la-parole-aux-familles-pour-faire-avancer-les-pratiques\/","title":{"rendered":"\u00c9tats g\u00e9n\u00e9raux des cancers p\u00e9diatriques : donner la parole aux familles pour faire avancer les pratiques"},"content":{"rendered":"

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Mardi 8 septembre, l\u2019h\u00f4pital Necker-Enfants Malades a accueilli l\u2019avant-derni\u00e8re rencontre avec les familles organis\u00e9e dans le cadre des \u00c9tats g\u00e9n\u00e9raux des cancers p\u00e9diatriques port\u00e9s par l\u2019UNAPECLE<\/strong>.<\/p>\n<\/div>\n<\/div>\n<\/div>\n

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\u00a9 UNAPECLE<\/p>\n<\/div>\n<\/div>\n<\/div>\n

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Cette matin\u00e9e d\u2019\u00e9changes a permis \u00e0 des familles d\u2019enfants pris en charge \u00e0 l\u2019h\u00f4pital Necker pour un cancer p\u00e9diatrique de partager leur exp\u00e9rience et leur ressenti tout au long du parcours de soins : du diagnostic au suivi post-th\u00e9rapeutique, en passant par les traitements, mais aussi, pour certaines familles, l\u2019\u00e9preuve particuli\u00e8rement douloureuse du deuil.<\/p>\n

Ces \u00e9changes, riches et sans d\u00e9tour, ont permis de mettre en lumi\u00e8re ce qui fonctionne bien dans l\u2019accompagnement de nos jeunes patients et de leurs proches, mais aussi ce qui peut et doit encore \u00eatre am\u00e9lior\u00e9 : les manques, les incompr\u00e9hensions, les h\u00e9sitations, les difficult\u00e9s parfois tr\u00e8s concr\u00e8tes du quotidien\u2026 Autant d\u2019\u00e9l\u00e9ments qui peuvent sembler anodins, mais qui prennent une importance majeure lorsque l\u2019on traverse un parcours aussi \u00e9prouvant.<\/p>\n

De ces t\u00e9moignages et de ces \u00e9changes sont n\u00e9es des recommandations concr\u00e8tes pour faire \u00e9voluer nos pratiques et mieux r\u00e9pondre aux besoins des enfants et de leurs familles.<\/p>\n

Cette rencontre s\u2019inscrit dans une d\u00e9marche nationale. Les conclusions de l\u2019ensemble des rencontres organis\u00e9es dans les diff\u00e9rents centres seront pr\u00e9sent\u00e9es collectivement en janvier prochain \u00e0 l\u2019Assembl\u00e9e nationale, avant de donner lieu \u00e0 la r\u00e9daction d\u2019un livre blanc.<\/p>\n

L\u2019ambition est claire :\u00a0transformer la parole des patients et des familles en actions concr\u00e8tes<\/strong>, pour am\u00e9liorer durablement le quotidien, l\u2019accompagnement et la prise en charge des enfants et adolescents atteints de cancers p\u00e9diatriques.<\/p>\n

Un grand merci \u00e0 toutes celles et tous ceux qui ont rendu possible cette matin\u00e9e et qui contribuent, par leur \u00e9coute et leur engagement, \u00e0 faire progresser nos pratiques.<\/p>\n

Merci aux familles et aux patients pour leur confiance, leur sinc\u00e9rit\u00e9 et leur courage.<\/strong><\/p>\n

Merci \u00e0 l\u2019UNAPECLE pour l\u2019organisation.<\/strong><\/p>\n

Merci aux soignants.\u00a0<\/strong><\/p>\n

Parce que derri\u00e8re chaque recommandation, il y a une exp\u00e9rience v\u00e9cue. Et parce que c\u2019est en \u00e9coutant celles et ceux qui traversent ces parcours que nous pouvons r\u00e9ellement les am\u00e9liorer.<\/p>\n

H\u00f4pital Necker – Enfants Malades, APHP, Universit\u00e9 Paris Cit\u00e9, Necker Pediatric Cancer Surgery Group.<\/strong><\/p>\n<\/div>\n<\/div>\n<\/div>\n

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\u00c0<\/span> lire aussi<\/h2>\n

[\/et_pb_text][et_pb_blog _builder_version=\u00a0\u00bb3.21″ posts_number=\u00a0\u00bb4″ include_categories=\u00a0\u00bb13″ show_author=\u00a0\u00bboff\u00a0\u00bb show_date=\u00a0\u00bboff\u00a0\u00bb show_pagination=\u00a0\u00bboff\u00a0\u00bb border_width_bottom_fullwidth=\u00a0\u00bb1px\u00a0\u00bb border_color_bottom_fullwidth=\u00a0\u00bbrgba(51,51,51,0.18)\u00a0\u00bb custom_padding=\u00a0\u00bb||50px|\u00a0\u00bb module_id=\u00a0\u00bbpage_type_blog\u00a0\u00bb header_level=\u00a0\u00bbh4″ \/][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t<\/div> Mardi 8 septembre, l\u2019h\u00f4pital Necker-Enfants Malades a accueilli l\u2019avant-derni\u00e8re rencontre avec les familles organis\u00e9e dans le cadre des \u00c9tats g\u00e9n\u00e9raux des cancers p\u00e9diatriques port\u00e9s par l\u2019UNAPECLE.
\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t<\/div> \u00a9 UNAPECLE
\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t\t\n\t\t\t<\/div> Cette matin\u00e9e d\u2019\u00e9changes a permis \u00e0 des familles d\u2019enfants pris en charge \u00e0 l\u2019h\u00f4pital Necker pour un cancer p\u00e9diatrique de partager leur exp\u00e9rience et… Lire la suite \u00c9tats g\u00e9n\u00e9raux des cancers p\u00e9diatriques : donner la parole aux familles pour faire avancer les pratiques<\/span><\/a><\/p>\n","protected":false},"author":480,"featured_media":107232,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[1],"tags":[],"coauthors":[55],"class_list":["post-107231","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-medecine"],"_links":{"self":[{"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/posts\/107231","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/users\/480"}],"replies":[{"embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/comments?post=107231"}],"version-history":[{"count":2,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/posts\/107231\/revisions"}],"predecessor-version":[{"id":107361,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/posts\/107231\/revisions\/107361"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/media\/107232"}],"wp:attachment":[{"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/media?parent=107231"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/categories?post=107231"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/tags?post=107231"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/u-paris.fr\/medecine\/wp-json\/wp\/v2\/coauthors?post=107231"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}