{"id":106641,"date":"2026-06-15T09:37:19","date_gmt":"2026-06-15T07:37:19","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=106641"},"modified":"2026-06-15T09:55:19","modified_gmt":"2026-06-15T07:55:19","slug":"couleurs-pfic-comprendre-le-pfic-grace-au-reseau-pfic","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/couleurs-pfic-comprendre-le-pfic-grace-au-reseau-pfic\/","title":{"rendered":"Couleurs PFIC\u00a0: Comprendre le PFIC gr\u00e2ce au r\u00e9seau PFIC"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><em>La cholestase intrah\u00e9patique familiale progressive (PFIC) est une maladie complexe. Trouver des informations fiables \u00e0 son sujet ne devrait pas l\u2019\u00eatre. PFIC Colors a \u00e9t\u00e9 con\u00e7u pour aider les familles \u00e0 mieux comprendre cette maladie et \u00e0 trouver rapidement les informations et le soutien dont elles ont besoin.<\/em><\/p>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-6.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash hidden\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                                            <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>La cholestase intrah\u00e9patique familiale progressive (PFIC) est un groupe de maladies h\u00e9patiques h\u00e9r\u00e9ditaires rares qui peuvent affecter les personnes de diff\u00e9rentes mani\u00e8res. Les sympt\u00f4mes, l\u2019\u00e9volution de la maladie et les traitements n\u00e9cessaires varient selon les diff\u00e9rents types de PFIC.1<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/ipsencom-staging.go-vip.net\/fr\/?s=Maladies+Rares\"><\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cette complexit\u00e9 rend la PFIC difficile \u00e0 comprendre pour les familles, surtout au d\u00e9but, apr\u00e8s le diagnostic. Les familles confront\u00e9es \u00e0 un diagnostic de PFIC d\u00e9crivent souvent les premiers jours comme accablants, d\u00e9routants et isolants. La complexit\u00e9 de la maladie et sa pr\u00e9sentation variable d\u2019une personne \u00e0 l\u2019autre peuvent rendre difficile la compr\u00e9hension et la recherche d\u2019informations correspondant \u00e0 leur v\u00e9cu.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Cette p\u00e9riode peut \u00eatre source de solitude et de confusion, remplie de questions et d\u2019incertitudes. Dans ces moments-l\u00e0, avoir acc\u00e8s \u00e0 des ressources fiables, \u00e9labor\u00e9es par la communaut\u00e9, peut apporter de la clart\u00e9 et du r\u00e9confort face \u00e0 une situation qui peut para\u00eetre insurmontable. C\u2019est pr\u00e9cis\u00e9ment ce que les familles peuvent trouver sur<strong>\u00a0<a href=\"https:\/\/www.pfic.org\/\">le site web du R\u00e9seau PFIC.<\/a><\/strong><\/p>\n\n\n\n<p class=\"has-white-color has-text-color has-link-color wp-elements-7e4ac651328708ea719ac0894fa30934 wp-block-paragraph\">.<\/p>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-6.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Comprendre la PFIC gr\u00e2ce \u00e0 la couleur                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>Pour aider les personnes \u00e0 trouver des informations factuelles, pr\u00e9cises et bienveillantes, Ipsen s\u2019est associ\u00e9 \u00e0 R\u00e9seau PFIC afin de d\u00e9velopper une campagne positive et engageante diffus\u00e9e via les canaux num\u00e9riques, notamment les r\u00e9seaux sociaux, pour atteindre les personnes recherchant des informations sur la PFIC. L\u2019engagement est encourag\u00e9 gr\u00e2ce \u00e0 un contenu qui utilise le concept positif, inspirant et simple de pr\u00e9senter la PFIC comme une maladie aux multiples facettes.<\/p>\n<p>Cette initiative, inspir\u00e9e par la couleur, vise \u00e0 mieux comprendre la complexit\u00e9 de la PFIC en orientant les familles vers l\u2019ensemble des ressources disponibles sur le site web du R\u00e9seau PFIC. Elle a pour objectif de redonner de la couleur \u00e0 la vie des personnes concern\u00e9\u00b7e\u00b7s gr\u00e2ce \u00e0 des informations plus claires et plus accessibles, et \u00e0 un lien significatif avec une communaut\u00e9 qui comprend leur v\u00e9cu.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"video-card \">\n        <div class=\"container\">\n            <!-- Block Details -->\n            <div class=\"video-card-header\">\n                <h3 class=\"video-card-block-title visible heading-three\">\n                    L\u2019importance de la clart\u00e9, du lien et de la communaut\u00e9                <\/h3>\n                <p class=\"charcoal-grey video-card-block-summary visible\"> \n                    <p>Emily Ventura, cofondatrice et directrice g\u00e9n\u00e9rale du R\u00e9seau PFIC et m\u00e8re de Cedar, atteinte de PFIC, a elle-m\u00eame v\u00e9cu les difficult\u00e9s rencontr\u00e9es lors des premiers stades du diagnostic.<\/p>\n<p>Dans la vid\u00e9o ci-dessous, Emily pr\u00e9sente plus en d\u00e9tail cette initiative et explique pourquoi il est si important d&#8217;apporter clart\u00e9, soutien et solidarit\u00e9 aux familles touch\u00e9\u00b7e\u00b7s par la PFIC.<\/p>\n                <\/p>\n            <\/div>\n\n            <!-- Video Iframe embed -->\n                            <div class=\"video-embed\"> \n                <iframe loading=\"lazy\" title=\"Comms_PFIC_Colors Campaign_Emily Ventura Full Video_v3\" src=\"https:\/\/player.vimeo.com\/video\/1195912919?app_id=122963&#038;autoplay=1&#038;muted=1&#038;controls=1&#038;loop=1&#038;autopause=1&#038;background=0\" width=\"640\" height=\"360\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" id=\"ipsen-video-1\" class=\"veeva_video\" data-ot-ignore><\/iframe>                <\/div>\n            \n            <!-- Block CTA -->\n            <div class=\"cta-block hidden\">\n                            <\/div>\n\n        <\/div>\n    <\/section>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><em>\u00ab\u00a0Lorsque ma fille a re\u00e7u le diagnostic [de PFIC], en 2012, nous n\u2019avons re\u00e7u aucune ressource ni aucun contact avec une quelconque communaut\u00e9 pour obtenir du soutien\u00a0; il n\u2019en existait aucune \u00e0 l\u2019\u00e9poque. Cela nous a laiss\u00e9\u00b7e\u00b7s avec un sentiment de solitude, d\u2019isolement et de peur face \u00e0 son diagnostic.\u00a0\u00bb<\/em><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Au fil de ses \u00e9changes avec d&#8217;autres parents confront\u00e9\u00b7e\u00b7s \u00e0 des situations similaires, Emily a constat\u00e9 que de nombreuses personnes atteintes de PFIC se retrouvaient sans accompagnement ni soutien. Ce constat a donn\u00e9 naissance \u00e0 R\u00e9seau PFIC, aujourd&#8217;hui une communaut\u00e9 internationale offrant un large \u00e9ventail d&#8217;informations fiables et un r\u00e9seau de soutien aux personnes touch\u00e9\u00b7e\u00b7s par la PFIC et \u00e0 leurs proches.<\/p>\n\n\n\n<p class=\"has-white-color has-text-color has-link-color wp-elements-7e4ac651328708ea719ac0894fa30934 wp-block-paragraph\">.<\/p>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-6.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Explorez les couleurs du PFIC                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>L&#8217;approche PFIC Colors vise \u00e0 aider les familles \u00e0 mieux comprendre la PFIC. En organisant l&#8217;information en six th\u00e8mes, chacun associ\u00e9 \u00e0 une couleur, et en s&#8217;appuyant sur des t\u00e9moignages concrets, le R\u00e9seau PFIC aide les familles \u00e0 se sentir plus confiantes et plus ma\u00eetresses de leur parcours.<\/p>\n<p>Pour en savoir plus sur la PFIC, cliquez sur les encadr\u00e9s th\u00e9matiques ci-dessous pour acc\u00e9der \u00e0 la section d\u00e9di\u00e9e du site web de R\u00e9seau PFIC.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" height=\"373\" width=\"1024\" src=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png?w=1024\" alt=\"\" class=\"wp-image-106615\" srcset=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png 1270w, https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png?resize=150,55 150w, https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png?resize=300,109 300w, https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png?resize=768,279 768w, https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Colour-wheel_landscape_French_v1.png?resize=1024,373 1024w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/Image2-1.jpg)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Diagnostic de la PFIC                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>La PFIC est g\u00e9n\u00e9ralement diagnostiqu\u00e9e chez les nourrissons et les jeunes enfants, mais aussi chez les adolescents et les adultes. Au d\u00e9but, il est normal de ressentir de la peur, de l&#8217;isolement et de ne pas savoir vers qui se tourner.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/pfic-diagnosis\/\" target=\"_blank\">\n                                D\u00e9couvrez comment les m\u00e9decins utilisent diff\u00e9rents tests pour \u00e9tablir un diagnostic                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-2.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Les d\u00e9mangeaisons (prurit)                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>Les sympt\u00f4mes peuvent avoir un impact consid\u00e9rable sur la vie quotidienne, mais ils peuvent \u00eatre g\u00e9r\u00e9s. L&#8217;un des plus courants est une d\u00e9mangeaison intense (prurit).<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/the-itch-pruritus\/\" target=\"_blank\">\n                                Consultez les suggestions utiles de la communaut\u00e9 pour soulager les d\u00e9mangeaisons                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-3.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Types de PFIC                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>On conna\u00eet actuellement 13 types de PFIC, chacun \u00e9tant caus\u00e9 par des mutations g\u00e9n\u00e9tiques diff\u00e9rentes. Bien que de nombreux sympt\u00f4mes se recoupent entre les diff\u00e9rents types de PFIC, chaque type pr\u00e9sente des caract\u00e9ristiques distinctes. De nouveaux types sont r\u00e9guli\u00e8rement d\u00e9couverts, ce qui nous permet de mieux comprendre la PFIC et, \u00e0 terme, d&#8217;am\u00e9liorer la prise en charge.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/pfic-types-and-subtypes\/\" target=\"_blank\">\n                                D\u00e9couvrez en quoi diff\u00e8rent les diff\u00e9rents types de PFIC                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-4.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        PFIC chez l&#039;adulte                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>La PFIC est g\u00e9n\u00e9ralement diagnostiqu\u00e9e chez l&#8217;enfant, mais elle peut aussi toucher les adultes, parfois apr\u00e8s des ann\u00e9es de sympt\u00f4mes h\u00e9patiques inexpliqu\u00e9s. Ses manifestations peuvent diff\u00e9rer de celles observ\u00e9es chez l&#8217;enfant, ce qui peut compliquer le diagnostic. Comprendre le v\u00e9cu des adultes atteint\u00b7e\u00b7s de PFIC peut vous aider \u00e0 trouver le soutien et les soins adapt\u00e9s.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/adult-diagnosis-transition-to-adult-care\/\" target=\"_blank\">\n                                D\u00e9couvrez ce que signifie vivre avec une PFIC \u00e0 l&#039;\u00e2ge adulte                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-5.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        G\u00e9n\u00e9tique                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>La PFIC est une maladie h\u00e9r\u00e9ditaire, c&#8217;est-\u00e0-dire qu&#8217;elle se transmet de g\u00e9n\u00e9ration en g\u00e9n\u00e9ration au sein des familles. M\u00eame avec le m\u00eame type de PFIC, les sympt\u00f4mes peuvent varier consid\u00e9rablement d&#8217;une personne \u00e0 l&#8217;autre en fonction des modifications (ou mutations) sp\u00e9cifiques du g\u00e8ne impliqu\u00e9. De nouvelles mutations sont r\u00e9guli\u00e8rement d\u00e9couvertes, ce qui contribue \u00e0 am\u00e9liorer le diagnostic, la compr\u00e9hension et la prise en charge de la PFIC.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/genetics-of-pfic\/\" target=\"_blank\">\n                                D\u00e9couvrez comment nos g\u00e8nes d\u00e9clenchent la PFIC                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n    <section class=\"title-text img-bg\">\n        <div class=\"container\">\n            <div class=\"title-text-inner\" style=\"background-image:url(https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/06\/background-6.png)\">\n\n                <!-- If heading is enabled then it's visible -->\n                <div class=\"text-head-dash visible\">\n                <h3 class=\"heading-three\" role=\"heading\" aria-level=\"2\">\n                        Traitement                    <\/h3>\n                <\/div>\n               \n                <!-- If description is enabled then it's visible -->\n                <div class=\"text-parbase visible\">\n                    <p>Il existe diff\u00e9rentes options de traitement, allant des m\u00e9dicaments \u00e0 la chirurgie en passant par la transplantation h\u00e9patique. En discuter avec votre m\u00e9decin vous permettra de d\u00e9terminer le traitement le plus adapt\u00e9 \u00e0 votre situation ou \u00e0 celle de votre enfant.<\/p>\n                <\/div>\n\n                <!-- If button is enabled then it's visible -->\n                                        <div class=\"btn-txt\">\n                            <a \n                                aria-label=\"\" \n                                class=\"btn-link section-btn cta-visible\"  \n                                role=\"link\"\n                                href=\"https:\/\/www.pfic.org\/learn-about-pfic-disease\/pfic-treatments\/\" target=\"_blank\">\n                                D\u00e9couvrez comment diff\u00e9rents traitements, utilis\u00e9s seuls ou en association, peuvent aider \u00e0 soulager la PFIC                            <\/a>\n                        <\/div>\n                \n            <\/div>\n        <\/div>\n    <\/section>\n\n\n\n<p class=\"has-text-align-center wp-block-paragraph\">Rendez-vous sur PFIC.org pour obtenir toutes les informations concernant le PFIC.<\/p>\n\n\n\n<p class=\"has-text-align-center wp-block-paragraph\"><strong>Cette campagne a \u00e9t\u00e9 d\u00e9velopp\u00e9e conjointement par Ipsen et R\u00e9seau PFIC.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La cholestase intrah\u00e9patique familiale progressive (PFIC) est une maladie complexe. Trouver des informations fiables \u00e0 son sujet ne devrait pas<\/p>\n","protected":false},"author":11,"featured_media":106635,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[1192],"tags":[],"class_list":["post-106641","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Couleurs PFIC\u00a0: Comprendre le PFIC gr\u00e2ce au r\u00e9seau PFIC - Global<\/title>\n<meta name=\"description\" content=\"La cholestase intrah\u00e9patique familiale progressive (PFIC) est une maladie complexe. 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