{"id":2019,"date":"2026-10-02T15:16:42","date_gmt":"2026-10-02T13:16:42","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/journee-mondiale-de-lamylose-2026-table-ronde\/"},"modified":"2026-10-09T09:12:40","modified_gmt":"2026-10-09T07:12:40","slug":"journee-mondiale-de-lamylose-2026-table-ronde","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/journee-mondiale-de-lamylose-2026-table-ronde\/","title":{"rendered":"Journ\u00e9e Mondiale de l\u2019Amylose 2026 : Table ronde"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong><em>Les proches aidants au c\u0153ur de l\u2019amylose<\/em><\/strong><strong><\/strong><\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Les proches aidants ont des histoires, des questions, des craintes et des exp\u00e9riences qui m\u00e9ritent d\u2019\u00eatre partag\u00e9es.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\">Pour la <strong>Journ\u00e9e Mondiale de l\u2019Amylose 2026<\/strong>, l\u2019Amyloidosis Alliance pr\u00e9sente une <strong>Table ronde<\/strong> sp\u00e9ciale d\u00e9di\u00e9e aux proches aidants et \u00e0 leur r\u00f4le essentiel dans le parcours de l\u2019amylose.<\/p>\n\n<p class=\"wp-block-paragraph\">Film\u00e9e \u00e0 Paris et disponible dans le monde entier le <strong>26 octobre<\/strong>, cette conversation sp\u00e9ciale r\u00e9unira des proches aidants, des patients et des professionnels de sant\u00e9 pour partager leurs exp\u00e9riences, leur expertise et des perspectives pratiques.<\/p>\n\n<p class=\"wp-block-paragraph\">Sous le th\u00e8me <strong>\u00ab Les proches aidants au c\u0153ur de l\u2019amylose \u00bb<\/strong>, la discussion explorera comment l\u2019on devient aidant, comment l\u2019amylose peut transformer les relations et les r\u00f4les familiaux, la place des aidants dans le parcours m\u00e9dical, l\u2019impact \u00e9motionnel et psychologique de l\u2019aide, et l\u2019importance de soutenir les aidants eux-m\u00eames. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<p class=\"wp-block-paragraph\">Au c\u0153ur de la conversation se trouve une question essentielle :<\/p>\n\n<p class=\"has-text-align-center wp-block-paragraph\"><strong>Qui prend soin du proche aidant ?<\/strong><\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Devenir proche aidant<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">La plupart des gens ne d\u00e9cident pas un jour de devenir proches aidants. Tr\u00e8s souvent, cela arrive progressivement. <\/p>\n\n<p class=\"wp-block-paragraph\">Un partenaire, un fils, une fille ou un autre proche commence par aider lors d\u2019un rendez-vous, par organiser les t\u00e2ches quotidiennes ou par apporter un soutien \u00e9motionnel. Petit \u00e0 petit, les responsabilit\u00e9s peuvent cro\u00eetre et les relations changer. <\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Lors de la table ronde<\/strong>, des proches aidants et des patients partageront leurs exp\u00e9riences personnelles de cette transition : comment l\u2019amylose est entr\u00e9e dans leur vie, quand ils ont commenc\u00e9 \u00e0 reconna\u00eetre leur r\u00f4le d\u2019aidant, et comment cela a affect\u00e9 leurs relations, leur vie familiale et leur vie professionnelle. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<p class=\"wp-block-paragraph\">La conversation explorera \u00e9galement l\u2019exp\u00e9rience particuli\u00e8re de s\u2019occuper d\u2019un parent, lorsque les r\u00f4les familiaux \u00e9tablis de longue date commencent \u00e0 changer et que la personne qui s\u2019occupait autrefois de vous peut progressivement devenir celle dont vous devez vous occuper. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Les proches aidants, acteurs du parcours de soins<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">Les proches aidants peuvent \u00e9galement jouer un r\u00f4le important tout au long du parcours m\u00e9dical.<\/p>\n\n<p class=\"wp-block-paragraph\">Les rendez-vous m\u00e9dicaux peuvent impliquer une grande quantit\u00e9 d\u2019informations, d\u2019incertitudes et de pr\u00e9paration. Les proches aidants peuvent aider \u00e0 pr\u00e9parer les questions, \u00e0 m\u00e9moriser les informations importantes, \u00e0 prendre des notes ou \u00e0 partager des observations de la vie quotidienne qui peuvent \u00eatre pr\u00e9cieuses pour les professionnels de sant\u00e9. <\/p>\n\n<p class=\"wp-block-paragraph\">La discussion examinera comment les proches aidants peuvent \u00eatre impliqu\u00e9s dans ce parcours tout en veillant \u00e0 ce que <strong>la voix et l\u2019autonomie du patient restent centrales<\/strong>. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<p class=\"wp-block-paragraph\">La table ronde apportera des perspectives \u00e0 la fois m\u00e9dicales et psychologiques sur ces questions, aux c\u00f4t\u00e9s des exp\u00e9riences v\u00e9cues par les patients et les proches aidants.<\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Quand le r\u00f4le d\u2019aidant devient trop lourd<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">L\u2019aide peut commencer par des choses qui semblent relativement mineures : un rendez-vous, un appel t\u00e9l\u00e9phonique, un peu d\u2019organisation suppl\u00e9mentaire. Mais progressivement, ces responsabilit\u00e9s peuvent s\u2019accumuler. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026  <\/p>\n\n<p class=\"wp-block-paragraph\">Quand l\u2019aide devient-elle excessive ? Comment les proches aidants peuvent-ils reconna\u00eetre qu\u2019ils atteignent leurs propres limites ? Pourquoi demander de l\u2019aide peut-il \u00eatre si difficile ? Et comment les familles, les amis et les professionnels de sant\u00e9 peuvent-ils reconna\u00eetre quand un aidant a lui aussi besoin de soutien ?   <\/p>\n\n<p class=\"wp-block-paragraph\">Ces questions seront explor\u00e9es ouvertement lors de la table ronde, y compris l\u2019impact \u00e9motionnel et psychologique de l\u2019aide et l\u2019importance de prot\u00e9ger l\u2019identit\u00e9, les relations, le travail, les int\u00e9r\u00eats et la qualit\u00e9 de vie de l\u2019aidant.<\/p>\n\n<p class=\"wp-block-paragraph\">Les donn\u00e9es de l\u2019enqu\u00eate <strong>AMYlife Global Amyloidosis Survey<\/strong> aideront \u00e9galement \u00e0 mettre ces exp\u00e9riences en perspective : <strong>51 % des proches aidants d\u00e9clarent que l\u2019assistance aux patients est une t\u00e2che quotidienne, tandis que 39 % ont d\u00fb adapter leur situation professionnelle.<\/strong> Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026<\/p>\n\n<p class=\"wp-block-paragraph\">L\u2019enqu\u00eate montre \u00e9galement l\u2019impact plus large que l\u2019aide peut avoir sur la vie d\u2019une personne : <strong>69 % des proches aidants estiment que leur qualit\u00e9 de vie s\u2019est d\u00e9t\u00e9rior\u00e9e, et 45 % ont d\u00fb renoncer \u00e0 voyager.<\/strong> Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026<\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Prendre soin du proche aidant<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">Soutenir les proches aidants ne devrait pas seulement signifier aider quelqu\u2019un \u00e0 devenir un meilleur aidant. Cela devrait aussi signifier l\u2019aider \u00e0 <strong>rester lui-m\u00eame<\/strong>. <\/p>\n\n<p class=\"wp-block-paragraph\">Trouver du temps pour ses amiti\u00e9s, son travail, sa famille, ses int\u00e9r\u00eats personnels ou simplement des moments o\u00f9 l\u2019on n\u2019est pas d\u00e9fini par son r\u00f4le d\u2019aidant peut \u00eatre essentiel.<\/p>\n\n<p class=\"wp-block-paragraph\">\u00c0 travers des r\u00e9cits personnels et des perspectives professionnelles, la discussion explorera ce \u00e0 quoi peut ressembler un soutien significatif, comment la famille et les amis peuvent aider, ce que les organisations de patients peuvent faire, et pourquoi les proches aidants ne devraient pas se sentir coupables d\u2019avoir besoin de temps et de soutien pour eux-m\u00eames. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Des voix issues de toute la communaut\u00e9 de l\u2019amylose<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">Anim\u00e9e par <strong>Marco Horanieh<\/strong>, la table ronde r\u00e9unira diff\u00e9rentes voix et perspectives de la communaut\u00e9 internationale de l\u2019amylose :<\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong>Dr Laura Obici<\/strong> <strong>(Italie)<\/strong> : M\u00e9decin et sp\u00e9cialiste de l\u2019amylose <\/li>\n\n\n\n<li><strong>Julie<\/strong> Pompougnac (France) : Psychologue <\/li>\n\n\n\n<li><strong>Mascha Hammink<\/strong> : Proche aidante <\/li>\n\n\n\n<li><strong>Ric-Paul Hammink<\/strong> : Patient <\/li>\n\n\n\n<li><strong>Emmanuel Jammes<\/strong> <strong>(France)<\/strong> : Proche aidant <\/li>\n\n\n\n<li><strong>Barbara Coelho (Br\u00e9sil)<\/strong> : Proche aidante <\/li>\n\n\n\n<li><strong>Jaime Christmas<\/strong> <strong>(Nouvelle-Z\u00e9lande)<\/strong> : Proche aidant<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">Leurs exp\u00e9riences et leur expertise seront compl\u00e9t\u00e9es par des entretiens pr\u00e9enregistr\u00e9s et de courtes contributions vid\u00e9o, permettant \u00e0 l\u2019exp\u00e9rience v\u00e9cue et \u00e0 l\u2019expertise professionnelle de se r\u00e9pondre tout au long de la conversation. Journ\u00e9e Mondiale de l\u2019Amylose 2026\u2026 <\/p>\n\n<h2 class=\"wp-block-heading\"><strong>Partag\u00e9 dans le monde entier le 26 octobre.<\/strong><\/h2>\n\n<p class=\"wp-block-paragraph\">Cette conversation est destin\u00e9e \u00e0 l\u2019ensemble de la communaut\u00e9 internationale de l\u2019amylose.<\/p>\n\n<p class=\"wp-block-paragraph\">La <strong>Table ronde de la Journ\u00e9e Mondiale de l\u2019Amylose 2026 : \u00ab Les proches aidants au c\u0153ur de l\u2019amylose \u00bb<\/strong> sera disponible dans le monde entier le <strong>26 octobre<\/strong> via les <strong>r\u00e9seaux sociaux de l\u2019Amyloidosis Alliance, sa cha\u00eene YouTube et directement ici sur notre site web<\/strong>.<\/p>\n\n<p class=\"wp-block-paragraph\">Nous invitons les patients, les proches aidants, les familles, les professionnels de sant\u00e9, les organisations de patients et toutes les personnes touch\u00e9es par l\u2019amylose \u00e0 se joindre \u00e0 la conversation, \u00e0 \u00e9couter ces voix et \u00e0 aider \u00e0 rendre l\u2019exp\u00e9rience des aidants plus visible.<\/p>\n\n<p class=\"wp-block-paragraph\">Parce que prendre soin de quelqu\u2019un compte.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Et prendre soin du proche aidant compte aussi.<\/strong><\/p>\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p class=\"wp-block-paragraph\"><strong>Retenez la date : 26 octobre 2026.<\/strong><\/p>\n<\/blockquote>\n\n<p class=\"wp-block-paragraph\"><strong>Suivez la conversation. Partagez-la. Aidez \u00e0 rendre les proches aidants visibles.  <\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Pour la Journ\u00e9e Mondiale de l\u2019Amylose 2026, l\u2019Amyloidosis Alliance pr\u00e9sente une table ronde sp\u00e9ciale d\u00e9di\u00e9e aux proches aidants et \u00e0 leur r\u00f4le essentiel dans le parcours de l\u2019amylose.<\/p>\n","protected":false},"author":1,"featured_media":2020,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-2019","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e Mondiale de l\u2019Amylose 2026 : Table ronde<\/title>\n<meta name=\"description\" content=\"Pour la Journ\u00e9e Mondiale de l\u2019Amylose 2026, 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