{"id":88823,"date":"2025-10-03T15:47:47","date_gmt":"2025-10-03T13:47:47","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=88823"},"modified":"2025-10-14T13:20:44","modified_gmt":"2025-10-14T11:20:44","slug":"plus-forts-ensemble-pour-la-journee-de-sensibilisation-au-pfic","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/mediastatement-fr\/rare-diseases-mediastatement-fr\/plus-forts-ensemble-pour-la-journee-de-sensibilisation-au-pfic\/","title":{"rendered":"Plus forts ensemble pour la Journ\u00e9e de sensibilisation au PFIC\u00a0"},"content":{"rendered":"\n

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Hugo Gomes da Silva, Senior Vice President Global Medical Affairs (Maladies Rares) chez Ipsen, partage des r\u00e9flexions pr\u00e9cieuses sur les d\u00e9fis auxquels les familles sont confront\u00e9es tout au long de leur parcours avec le PFIC \u2014 et souligne l\u2019importance essentielle d\u2019une information fiable et du soutien de la communaut\u00e9.\u00a0<\/p>\n\n\n\n

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\u00c0 l\u2019occasion de la Journ\u00e9e de sensibilisation au PFIC, le 5 octobre, je repense \u00e0 ce que m\u2019ont confi\u00e9 les personnes vivant avec la cholestase intrah\u00e9patique familiale progressive (PFIC) et \u00e0 l\u2019impact de cette maladie, non seulement ce jour-l\u00e0, mais chaque jour de leur vie. Le PFIC est une maladie g\u00e9n\u00e9tique rare du foie, souvent diagnostiqu\u00e9e d\u00e8s l\u2019enfance, qui peut provoquer une atteinte progressive du foie, des d\u00e9mangeaisons intenses et avoir un impact profond sur la qualit\u00e9 de vie. <\/p>\n\n\n\n

Le th\u00e8me de cette ann\u00e9e, Plus forts ensemble<\/em>, illustre la puissance de l\u2019unit\u00e9, de l\u2019empathie et du partage de connaissances au sein de cette communaut\u00e9. Pour les familles, ce th\u00e8me incarne non seulement la sensibilisation \u00e0 la maladie elle-m\u00eame, mais aussi l\u2019assurance que personne ne devrait affronter le PFIC seul. <\/p>\n\n\n\n

J\u2019ai eu l\u2019occasion d\u2019\u00e9changer avec des parents qui incarnent cet esprit de force et de plaidoyer. Parmi eux, Emily Ventura, cofondatrice du PFIC Network et m\u00e8re de Cedar, qui vit avec le PFIC. Elle se souvient de la difficult\u00e9 des premiers jours suivant le diagnostic de sa fille : \u00ab D\u00e9couvrir ce que le PFIC signifiait vraiment pour ma fille \u00e9tait accablant. Je me sentais perdue et je ne savais pas o\u00f9 trouver des conseils fiables. \u00bb<\/em><\/strong> <\/p>\n\n\n\n

Ce qui a le plus aid\u00e9 Emily, c\u2019est de trouver une communaut\u00e9 de familles qui avaient suivi le m\u00eame chemin, transformant ainsi sa peur en confiance. Inspir\u00e9e par cette exp\u00e9rience, elle a cofond\u00e9 le PFIC Network, qui fournit \u00e0 la fois des informations fiables et un espace s\u00fbr o\u00f9 les familles peuvent se retrouver. <\/p>\n\n\n\n

Francesca a connu un parcours similaire lorsque sa fille, Eva Luna, a \u00e9t\u00e9 diagnostiqu\u00e9e avec le PFIC alors qu\u2019elle \u00e9tait encore b\u00e9b\u00e9. Les premiers mois ont \u00e9t\u00e9 marqu\u00e9s par l\u2019incertitude et la peur face \u00e0 ce que signifiait ce diagnostic. L\u2019un des d\u00e9fis les plus difficiles a \u00e9t\u00e9 de g\u00e9rer les d\u00e9mangeaisons persistantes d\u2019Eva Luna, que Francesca d\u00e9crivait comme \u00ab un monstre \u00bb<\/em> perturbant la vie familiale. Aider sa fille \u00e0 se sentir mieux et \u00e0 vivre une enfance heureuse et active est devenu le centre de leur parcours. De nombreuses autres familles partagent ce d\u00e9fi : trouver un \u00e9quilibre entre la gestion des sympt\u00f4mes, la vie quotidienne et l\u2019espoir pour l\u2019avenir. <\/p>\n\n\n\n

Pour Francesca, entrer en contact avec d\u2019autres m\u00e8res a \u00e9t\u00e9 une source d\u2019espoir et de perspective : \u00ab Il \u00e9tait tr\u00e8s important pour moi d\u2019\u00eatre en lien avec d\u2019autres mamans \u00e0 travers le monde. Cela m\u2019a donn\u00e9 beaucoup d\u2019espoir, car j\u2019ai vu leurs enfants grandir, aller \u00e0 l\u2019\u00e9cole et m\u00eame vivre une vie normale. \u00bb<\/em><\/strong> C\u2019est ce qui l\u2019a conduite \u00e0 cr\u00e9er PFIC Italia, qui soutient non seulement les familles en Italie, mais \u00e9galement au-del\u00e0 de ses fronti\u00e8res. <\/p>\n\n\n\n

Les parcours d\u2019Emily et de Francesca nous montrent que derri\u00e8re chaque diagnostic se trouve une famille en qu\u00eate de clart\u00e9, de soutien et de l\u2019assurance de ne pas \u00eatre seule. Pour faire face au PFIC, les familles ont besoin \u00e0 la fois de connaissances qui les renforcent et d\u2019une communaut\u00e9 qui leur donne de la force. <\/p>\n\n\n\n

Chez Ipsen, mes coll\u00e8gues et moi restons engag\u00e9s \u00e0 \u00e9couter les familles et \u00e0 \u00eatre \u00e0 leurs c\u00f4t\u00e9s. La Journ\u00e9e de sensibilisation au PFIC nous rappelle que faire progresser la science n\u2019est qu\u2019une partie de la solution ; la solidarit\u00e9 et le soutien sont tout aussi essentiels. En \u00e9tant plus forts ensemble, nous pouvons aider les familles \u00e0 se sentir inform\u00e9es, soutenues et jamais seules sur leur parcours. Le PFIC Network est une ressource de confiance pour les familles, r\u00e9unissant en un seul lieu un ensemble complet d\u2019informations, de conseils et de t\u00e9moignages. <\/p>\n\n\n\n

Pour en savoir plus sur le PFIC, rendez-vous sur le site du PFIC Network : PFIC.org<\/a><\/strong> ainsi que sur le PFIC Italia Network<\/a>.\u00a0<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Hugo Gomes da Silva, Senior Vice President Global Medical Affairs (Maladies Rares) chez Ipsen, partage des r\u00e9flexions pr\u00e9cieuses sur les<\/p>\n","protected":false},"author":97,"featured_media":89850,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[3551],"tags":[],"class_list":["post-88823","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-mediastatement-fr","entry"],"acf":[],"yoast_head":"\nPlus forts ensemble pour la Journ\u00e9e de sensibilisation au PFIC\u00a0 - Global<\/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:\/\/www.ipsen.com\/fr\/actualites\/mediastatement-fr\/rare-diseases-mediastatement-fr\/plus-forts-ensemble-pour-la-journee-de-sensibilisation-au-pfic\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Plus forts ensemble pour la Journ\u00e9e de sensibilisation au PFIC\u00a0 - 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