{"id":151580,"date":"2026-10-23T07:05:29","date_gmt":"2026-10-23T05:05:29","guid":{"rendered":"https:\/\/institutchiaribcn.com\/?post_type=comunicacion&#038;p=151580"},"modified":"2026-10-21T12:49:22","modified_gmt":"2026-10-21T10:49:22","slug":"rencontre-cssf-icseb-et-aisacsisco-odv-2026","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/fr\/rencontre-cssf-icseb-et-aisacsisco-odv-2026\/","title":{"rendered":"Rencontre entre la CSSf, l\u2019ICSEB et l\u2019AISACSISCO OdV \u00e0 la Maison ICSEB"},"content":{"rendered":"<p>Le <strong>30 septembre 2026<\/strong>, les repr\u00e9sentants de la <strong>Chiari &amp; Scoliosis &amp; Syringomyelia Foundation (CSSf)<\/strong> ont accueilli \u00e0 Barcelone les membres du <strong>nouveau Conseil d\u2019administration de l\u2019<em>Associazione Internazionale Sindrome Arnold Chiari, Siringomielia e Scoliosi<\/em> (AISACSISCO OdV)<\/strong>, association avec laquelle ils collaborent depuis 2009.<\/p>\n<p>La rencontre s\u2019est tenue \u00e0 la <strong>Maison ICSEB<\/strong> et a permis de renouveler les liens de collaboration entre les deux entit\u00e9s, ainsi que de continuer \u00e0 travailler sur des objectifs communs li\u00e9s \u00e0 <strong>l\u2019information, \u00e0 l\u2019accompagnement et au soutien des patients atteints du syndrome d\u2019Arnold-Chiari, de syringomy\u00e9lie, de scoliose et d\u2019autres pathologies associ\u00e9es \u00e0 la Maladie du Filum<\/strong>.<\/p>\n<h2><strong>AISACSISCO OdV : soutien aux patients atteints de Chiari, de syringomy\u00e9lie et de scoliose<\/strong><\/h2>\n<p>L\u2019<strong>AISACSISCO OdV<\/strong> est une association de patients et de proches, fond\u00e9e par un groupe de patients trait\u00e9s selon le <strong>Filum System\u00ae<\/strong>, en reconnaissance du travail du Dr M. B. Royo Salvador, neurochirurgien et concepteur de cette m\u00e9thode.<\/p>\n<p>Depuis sa cr\u00e9ation, l\u2019un des principaux objectifs de l\u2019association est <strong>d\u2019accompagner et d\u2019informer d\u2019autres patients<\/strong> face aux difficult\u00e9s susceptibles de survenir au cours du parcours diagnostique et th\u00e9rapeutique de maladies telles que le <strong><a href=\"https:\/\/institutchiaribcn.com\/fr\/arnold-chiari-syndrome\/\">syndrome d\u2019Arnold-Chiari<\/a>, la <a href=\"https:\/\/institutchiaribcn.com\/fr\/syringomyelie\/\">syringomy\u00e9lie<\/a> et la <a href=\"https:\/\/institutchiaribcn.com\/fr\/la-scoliose\/\">scoliose idiopathique<\/a><\/strong>, ainsi que d\u2019autres affections associ\u00e9es \u00e0 la Maladie du Filum.<\/p>\n<p>La collaboration entre les patients, les associations et les professionnels de sant\u00e9 peut contribuer \u00e0 faciliter l\u2019acc\u00e8s \u00e0 des informations sp\u00e9cialis\u00e9es et \u00e0 proposer un accompagnement aux diff\u00e9rentes \u00e9tapes du parcours de soins.<\/p>\n<h2><strong>Convention entre l\u2019ICSEB et l\u2019AISACSISCO OdV<\/strong><\/h2>\n<p>Depuis <strong>2019, une <a href=\"https:\/\/institutchiaribcn.com\/fr\/convention-institut-chiari-de-barcelona-association-internationale-ai-sac-si-sco-odv\/\">convention de collaboration<\/a> lie l\u2019Institut Chiari &amp; Siringomielia &amp; Escoliosis de Barcelona (ICSEB) et l\u2019AISACSISCO OdV<\/strong>.<\/p>\n<p>Cet accord permet aux membres de l\u2019association de b\u00e9n\u00e9ficier de <strong>diff\u00e9rents avantages li\u00e9s aux prestations et aux services destin\u00e9s aux patients trait\u00e9s selon le Filum System\u00ae<\/strong>.<\/p>\n<p>Cette collaboration facilite \u00e9galement la communication avec les patients internationaux, notamment gr\u00e2ce aux <strong>services italien et fran\u00e7ais de l\u2019ICSEB<\/strong>, qui utilisent ces langues pour accueillir, informer et accompagner les membres de l\u2019association.<\/p>\n<h2><strong>Objectifs communs de la CSSf, de l\u2019ICSEB et de l\u2019AISACSISCO<\/strong><\/h2>\n<p>Au cours de la r\u00e9union, le <strong>Dr M. B. Royo Salvador, pr\u00e9sident de la CSSf<\/strong>, et <strong>M. P. Aim\u00e8, pr\u00e9sident et tr\u00e9sorier de l\u2019AISACSISCO OdV<\/strong>, ont renouvel\u00e9 leur engagement \u00e0 poursuivre leur collaboration sur des objectifs communs et compl\u00e9mentaires :<\/p>\n<ul>\n<li><strong>Diffuser des informations sur les diagnostics li\u00e9s \u00e0 la Maladie du Filum et sur<\/strong> <strong>son traitement.<\/strong><\/li>\n<li><strong>Favoriser l\u2019accompagnement des membres de l\u2019association et leur faciliter l\u2019acc\u00e8s aux informations et <\/strong>pendant leur processus d\u2019information et d\u2019accompagnement.<\/li>\n<li>Continuer \u00e0 renforcer la collaboration entre les <strong>patients, les associations et les professionnels de sant\u00e9<\/strong>.<\/li>\n<\/ul>\n<p>Les autres membres du Conseil d\u2019administration de l\u2019AISACSISCO OdV \u2014 Mmes S. Salafia et B. Magario, ainsi que M. G. Ledda \u2014 ont \u00e9galement partag\u00e9 leur exp\u00e9rience en tant que patients trait\u00e9s selon le <strong>Filum System\u00ae<\/strong>.<\/p>\n<p>Apr\u00e8s avoir \u00e9voqu\u00e9 leur longue exp\u00e9rience de b\u00e9n\u00e9volat et d\u2019accompagnement d\u2019autres patients, ils ont r\u00e9affirm\u00e9 leur volont\u00e9 de continuer \u00e0 <strong>informer, \u00e9couter et soutenir les personnes pr\u00e9sentant des diagnostics li\u00e9s \u00e0 la Maladie du Filum<\/strong>, ainsi que leurs proches.<\/p>\n<h2><strong>Une rencontre pour continuer \u00e0 accompagner les patients<\/strong><\/h2>\n<p>Cette rencontre entre la <strong>CSSf, l\u2019ICSEB et l\u2019AISACSISCO OdV<\/strong> repr\u00e9sente une nouvelle occasion de renforcer une collaboration construite au fil des ann\u00e9es centr\u00e9e sur le patient.<\/p>\n<p>L\u2019ICSEB et la CSSf souhaitent exprimer leur gratitude \u00e0 tous les b\u00e9n\u00e9voles qui, depuis tant d\u2019ann\u00e9es, consacrent leur temps \u00e0 <strong>informer, \u00e9couter et accompagner les patients atteints du syndrome d\u2019Arnold-Chiari, de syringomy\u00e9lie, de scoliose et d\u2019autres pathologies associ\u00e9es \u00e0 la Maladie du Filum<\/strong>.<\/p>\n<p>Gr\u00e2ce \u00e0 ce travail d\u2019accompagnement, de nombreux patients ont pu trouver des informations, obtenir des r\u00e9ponses \u00e0 leurs questions concernant leur parcours de soins et, dans certains cas, se rendre \u00e0 Barcelone pour \u00eatre \u00e9valu\u00e9s et pris en charge par l\u2019\u00e9quipe de l\u2019ICSEB.<\/p>\n<p>Nous tenons \u00e0 exprimer toute notre reconnaissance et nos remerciements \u00e0 l\u2019ensemble des membres de l\u2019<strong>AISACSISCO OdV<\/strong> pour leur engagement et pour le travail qu\u2019ils poursuivent au service des patients et de leurs familles.<\/p>\n<p><strong>Un immense merci \u00e0 toutes et \u00e0 tous !<\/strong><\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"size-large wp-image-151491 aligncenter\" style=\"font-family: -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, 'Helvetica Neue', Arial, 'Noto Sans', sans-serif, 'Apple Color Emoji', 'Segoe UI Emoji', 'Segoe UI Symbol', 'Noto Color Emoji';\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Encuentro-Aisacsisco-ICSEB-2026.jpg\" alt=\"\" width=\"500\" height=\"375\" srcset=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Encuentro-Aisacsisco-ICSEB-2026.jpg 500w, https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Encuentro-Aisacsisco-ICSEB-2026-300x225.jpg 300w\" sizes=\"(max-width: 500px) 100vw, 500px\" \/><\/p>\n<p style=\"text-align: center;\"><em>Photo 1. De gauche \u00e0 droite : Mme M. Guerrero, secr\u00e9taire de la CSSf ; Mme B. Magario, membre du Conseil d\u2019administration de l\u2019AISACSISCO ; M. P. Aim\u00e8, pr\u00e9sident et tr\u00e9sorier de l\u2019AISACSISCO ; le Dr M. B. Royo Salvador, pr\u00e9sident de la CSSf ; Mme S. Salafia, membre du Conseil d\u2019administration de l\u2019AISACSISCO ; M. G. Ledda, membre de l\u2019AISACSISCO ; Mme G. Lu\u00e8, service d\u2019accueil et d\u2019accompagnement des patients de l\u2019ICSEB ; et Mme M. Espino, membre du conseil de fondation de la CSSf.<\/em><\/p>\n<p><img decoding=\"async\" class=\"size-full wp-image-151477 aligncenter\" src=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Aisacsisco-Casa-ICSEB-2026.jpg\" alt=\"\" width=\"500\" height=\"667\" srcset=\"https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Aisacsisco-Casa-ICSEB-2026.jpg 500w, https:\/\/institutchiaribcn.com\/wp-content\/uploads\/2026\/10\/Aisacsisco-Casa-ICSEB-2026-225x300.jpg 225w\" sizes=\"(max-width: 500px) 100vw, 500px\" \/><\/p>\n<p style=\"text-align: center;\"><em>Photo 2. Le groupe de travail CSSf-ICSEB-AISACSISCO OdV \u00e0 l\u2019issue de la rencontre, devant la Casa ICSEB.<\/em><\/p>\n","protected":false},"featured_media":151511,"template":"","tipos-de-comunicacion":[510],"class_list":["post-151580","comunicacion","type-comunicacion","status-publish","has-post-thumbnail","hentry","tipos-de-comunicacion-nouvelles"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rencontre entre la CSSf, l\u2019ICSEB et l\u2019AISACSISCO OdV<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/institutchiaribcn.com\/fr\/rencontre-cssf-icseb-et-aisacsisco-odv-2026\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rencontre entre la CSSf, l\u2019ICSEB et l\u2019AISACSISCO OdV\" \/>\n<meta property=\"og:description\" content=\"Le 30 septembre 2026, les repr\u00e9sentants de la Chiari &amp; Scoliosis &amp; Syringomyelia Foundation (CSSf) ont accueilli \u00e0 Barcelone les membres du nouveau Conseil d\u2019administration de l\u2019Associazione Internazionale Sindrome Arnold Chiari, Siringomielia e Scoliosi (AISACSISCO OdV), association avec laquelle ils collaborent depuis 2009. 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