{"id":8838,"date":"2026-03-30T11:23:20","date_gmt":"2026-03-30T09:23:20","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?p=8838"},"modified":"2026-03-30T11:23:21","modified_gmt":"2026-03-30T09:23:21","slug":"salle-comble-pour-le-colloque-annuel-lyon-2026","status":"publish","type":"post","link":"https:\/\/apaiser.org\/newsite\/2026\/03\/30\/salle-comble-pour-le-colloque-annuel-lyon-2026\/","title":{"rendered":"Salle comble pour le colloque annuel Lyon 2026\u00a0"},"content":{"rendered":"\n

Patients, familles venues de toute la France et professionnels de sant\u00e9 ont particip\u00e9 \u00e0 une journ\u00e9e d\u2019\u00e9changes particuli\u00e8rement dense consacr\u00e9e \u00e0 la malformation de Chiari et \u00e0 la syringomy\u00e9lie. Un succ\u00e8s marqu\u00e9 par la qualit\u00e9 des interventions et l\u2019attention constante du public. En effet, le colloque a rassembl\u00e9 un large public venu s\u2019informer et \u00e9changer autour de nos pathologies encore trop peu connues. Organis\u00e9e au Novotel Lyon Confluence, en bord de Sa\u00f4ne, la rencontre affichait complet, t\u00e9moignant d\u2019un r\u00e9el besoin d\u2019information et de partage.<\/p>\n\n\n\n

En ouverture, Mado Gilanton, pr\u00e9sidente d\u2019APAISER S&C a dress\u00e9 le bilan des actions men\u00e9es par l\u2019association, avant de laisser place \u00e0 une matin\u00e9e scientifique particuli\u00e8rement attendue.<\/p>\n\n\n\n

Une expertise m\u00e9dicale au c\u0153ur des \u00e9changes<\/strong><\/p>\n\n\n\n

Sous la mod\u00e9ration du professeur Fabrice Parker, coordonnateur du Centre de R\u00e9f\u00e9rence C-MAVEM, les sp\u00e9cialistes ont apport\u00e9 un \u00e9clairage pr\u00e9cis sur les enjeux de prise en charge. La s\u00e9quence p\u00e9diatrique a mis en lumi\u00e8re les sp\u00e9cificit\u00e9s du traitement chez l\u2019enfant. Le professeur Federico Di Rocco, chef de service du centre constitutif p\u00e9diatrique C-MAVEM \u00e0 HFME de Lyon a notamment d\u00e9taill\u00e9 les indications chirurgicales dans la malformation de Chiari, tandis que le Dr Pierre-Aur\u00e9lien Beuriat a pr\u00e9sent\u00e9 le programme d\u2019\u00e9ducation th\u00e9rapeutique innovant du service pour les petits patients atteints de Chiari. Autre point marquant : l\u2019intervention de l\u2019\u00e9quipe mobile de la douleur de l\u2019HFME de Lyon-Bron, avec Magali Marchal infirmi\u00e8re anesth\u00e9siste et Martin Blondeau, aide-soignant qui a soulign\u00e9 l\u2019importance d\u2019une prise en charge globale chez l\u2019enfant et les diff\u00e9rentes techniques utilis\u00e9s par l\u2019\u00e9quipe. Gwen Rolland, d\u00e9l\u00e9gu\u00e9e p\u00e9diatrique de l\u2019association, a de son c\u00f4t\u00e9, partag\u00e9 le retour d\u2019exp\u00e9rience des groupes de parole destin\u00e9s aux familles. <\/p>\n\n\n\n

La partie consacr\u00e9e aux adultes a poursuivi cette dynamique. Le professeur C\u00e9dric Barrey, chef du service
adulte des HCL s\u2019est int\u00e9ress\u00e9 \u00e0 l\u2019efficacit\u00e9 des traitements sur la syringomy\u00e9lie, tandis que le Dr Maria Rossella Fasinella a abord\u00e9 le sujet de l\u2019\u2019arachno\u00efdite. Les troubles de la d\u00e9glutition, souvent m\u00e9connus, ont \u00e9galement \u00e9t\u00e9 \u00e9voqu\u00e9s par l\u2019orthophoniste Aur\u00e9lie Driot. Les participants ont salu\u00e9 la qualit\u00e9 des pr\u00e9sentations, alliant rigueur scientifique et accessibilit\u00e9. Les temps de questions ont donn\u00e9 lieu \u00e0 des discussions approfondies, illustrant une v\u00e9ritable volont\u00e9 de compr\u00e9hension et de partage.<\/p>\n\n\n\n

Des parcours de vie et d\u2019engagement<\/strong><\/p>\n\n\n\n

L\u2019apr\u00e8s-midi a \u00e9largi les perspectives en s\u2019int\u00e9ressant \u00e0 l\u2019accompagnement des patients dans leur quotidien. Fr\u00e9d\u00e9ric Piriou a pr\u00e9sent\u00e9 l\u2019organisation de l\u2019\u00e9cosyst\u00e8me des maladies rares par une animation interactive tr\u00e8s appr\u00e9ci\u00e9e, tandis que H\u00e9l\u00e8ne Zingraff a d\u00e9taill\u00e9 les dispositifs d\u2019insertion et de reconversion professionnelle. Moment fort de la journ\u00e9e, une table ronde a donn\u00e9 la parole \u00e0 des patients engag\u00e9s\u00a0: Claude Personneni, Sylvia Da Costa et Alpha Oumar Bah ont partag\u00e9 leurs parcours, entre contraintes li\u00e9es \u00e0 la maladie et volont\u00e9 de rester acteurs de leur vie. La question des traitements \u00e0 base de cannabis, \u00e9voqu\u00e9e en conclusion par Mado Gilanton, a \u00e9galement suscit\u00e9 un vif int\u00e9r\u00eat, illustrant les attentes des patients face aux \u00e9volutions th\u00e9rapeutiques.<\/p>\n\n\n\n

Un besoin d\u2019information toujours aussi fort <\/strong><\/p>\n\n\n\n

Au fil des interventions, un constat s\u2019impose : l\u2019information, l\u2019\u00e9coute et la coordination des acteurs restent essentielles pour am\u00e9liorer la prise en charge. Port\u00e9 par un auditoire attentif du d\u00e9but \u00e0 la fin, ce colloque confirme le r\u00f4le cl\u00e9 d\u2019APAISER S&C dans la diffusion des connaissances et le soutien aux patients. Une mobilisation qui ne faiblit pas, \u00e0 l\u2019image d\u2019une communaut\u00e9 engag\u00e9e et solidaire.<\/p>\n\n\n\n

De la convivialit\u00e9, des \u00e9changes et de la joie<\/strong><\/p>\n\n\n\n

Une bonne partie des participants sont rest\u00e9s pour partager le diner ainsi que pour la journ\u00e9e
conviviale du dimanche pour une visite de Lyon guid\u00e9e par Fr\u00e9d\u00e9ric. Des moments pour parler entre
personnes qui se comprennent\u2026les nouveaux participants ont \u00e9t\u00e9 tr\u00e8s vite int\u00e9gr\u00e9s au groupe\u2026c\u2019est
le \u00ab\u00a0petit plus\u00a0\u00bb APAISER S&C sans cesse renouvel\u00e9\u00a0: Bienveillance, humour et humanit\u00e9. Fort de ce succ\u00e8s, l\u2019\u00e9v\u00e9nement qui s\u2019inscrit comme un rendez-vous incontournable pour tous les acteurs concern\u00e9s, se pr\u00e9pare pour 2027\u00a0\u2026

Une captation de la journ\u00e9e a \u00e9t\u00e9 r\u00e9alis\u00e9 et est mise en ligne sur notre chaine Youtube <\/a> et dans la page vid\u00e9os. <\/a><\/p>\n\n\n\n

Un grand merci \u00e0 la soci\u00e9t\u00e9 ALBINGIA<\/a>, qui nous a parmi cela par son soutien financier.<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Patients, familles venues de toute la France et professionnels de sant\u00e9 ont particip\u00e9 \u00e0 une journ\u00e9e d\u2019\u00e9changes particuli\u00e8rement dense consacr\u00e9e \u00e0 la malformation de Chiari et \u00e0 la syringomy\u00e9lie. Un succ\u00e8s marqu\u00e9 par la qualit\u00e9 des interventions et l\u2019attention constante du public. En effet, le colloque a rassembl\u00e9 un large public venu s\u2019informer et \u00e9changer autour de nos pathologies encore trop peu connues. Organis\u00e9e au Novotel Lyon Confluence, en bord de Sa\u00f4ne, la rencontre affichait complet, t\u00e9moignant d\u2019un r\u00e9el besoin d\u2019information et de partage.<\/p>\n","protected":false},"author":1,"featured_media":8839,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[35],"tags":[],"class_list":["post-8838","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actus"],"yoast_head":"\nSalle comble pour le colloque annuel Lyon 2026\u00a0 - Apaiser S&C<\/title>\n<meta name=\"description\" content=\"Patients, familles venues de toute la France et professionnels de sant\u00e9 ont particip\u00e9 \u00e0 une journ\u00e9e d\u2019\u00e9changes particuli\u00e8rement dense consacr\u00e9e \u00e0 la malformation de Chiari et \u00e0 la syringomy\u00e9lie. 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