{"id":1026,"date":"2025-01-02T10:41:58","date_gmt":"2025-01-02T08:41:58","guid":{"rendered":"https:\/\/www.ipsen.com\/france\/?p=1026"},"modified":"2025-01-02T10:41:59","modified_gmt":"2025-01-02T08:41:59","slug":"ipsen-notre-engagement-maladies-rares-du-foie","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/france\/ipsen-notre-engagement-maladies-rares-du-foie\/maladies-rares\/","title":{"rendered":"Ipsen, des gens ordinaires avec des ambitions extraordinaires pour les patients souffrants de maladies rares du foie"},"content":{"rendered":"\n

<\/p>\n\n\n\n

7 000 maladies rares et ultra-rares sont r\u00e9pertori\u00e9es \u00e0 ce jour. Seulement 5 % d\u2019entre elles b\u00e9n\u00e9ficient d\u2019un traitement approuv\u00e9 alors qu\u2019elles concernent 10 % de la population mondiale1<\/sup><\/sub>. Face \u00e0 l\u2019ampleur de l\u2019enjeu, voil\u00e0 30 ans qu\u2019Ipsen s\u2019est engag\u00e9 dans la lutte contre ces maladies pour am\u00e9liorer et prolonger la vie des personnes qui en sont atteintes. Depuis quelques ann\u00e9es, le groupe biopharmaceutique fran\u00e7ais \u00e0 dimension internationale a particuli\u00e8rement acc\u00e9l\u00e9r\u00e9 ses efforts d\u2019innovation dans le domaine des maladies rares du foie pour r\u00e9pondre aux besoins m\u00e9dicaux non couverts.<\/strong><\/p>\n\n\n\n

<\/p>\n\n\n\n

Une d\u00e9termination au service des patients<\/strong><\/h2>\n\n\n\n


Chez Ipsen, l\u2019une de nos ambitions est d\u2019aider les personnes atteintes de maladies rares du foie \u00e0 vivre pleinement leur vie, chaque jour. Pour y parvenir, depuis 2020, Ipsen a proc\u00e9d\u00e9 \u00e0 des acquisitions et nou\u00e9 des partenariats \u00e0 haute valeur ajout\u00e9e qui lui ont permis de concentrer ses efforts sur les maladies rares du foie comme les cholestases intrah\u00e9patiques familiales progressives (PFIC), le syndrome d\u2019Alagille (ALGS) ou encore la cholangite biliaire primitive (CBP).<\/p>\n\n\n\n

<\/p>\n\n\n\n

La cholangite biliaire primitive, une maladie du foie rare, invisible et insidieuse<\/strong><\/h2>\n\n\n\n


En France, la CBP touche environ 20 personnes sur 100 000, principalement des femmes (90 %) \u00e2g\u00e9es de plus de 40 ans2<\/sup>. Cette maladie \u00e9volutive grave provoque une inflammation chronique qui d\u00e9truit les petits canaux biliaires du foie. Elle peut entra\u00eener de graves complications comme le cancer du foie ou l\u2019insuffisance h\u00e9patique et n\u00e9cessiter une greffe de foie si la maladie est \u00e0 un stade avanc\u00e93<\/sup>. Souvent silencieuse dans sa phase initiale, elle se cache derri\u00e8re des sympt\u00f4mes qui peuvent \u00eatre tr\u00e8s invalidants : fatigue, d\u00e9mangeaisons (prurit), douleurs articulaires\u20263<\/sup> Pour les patients atteints d\u2019une maladie rare comme la CBP, chaque jour qui passe pr\u00e9sente d\u2019innombrables d\u00e9fis : un diagnostic souvent tardif, l\u2019isolement et le manque d\u2019\u00e9coute, l\u2019incompr\u00e9hension voire la stigmatisation. Une situation que Jean-Yves Loze, Directeur Affaires M\u00e9dicales Maladies Rares chez Ipsen France, r\u00e9sume en ces termes : \u00ab Au-del\u00e0 de la difficult\u00e9 de diagnostiquer et de traiter les maladies rares, l\u2019impact qu\u2019elles peuvent avoir sur le quotidien des patients est encore m\u00e9connu<\/em> \u00bb.<\/p>\n\n\n\n

<\/p>\n\n\n\n

Tout commence par l\u2019\u00e9coute et le dialogue
<\/strong><\/h2>\n\n\n\n

Ipsen collabore avec pr\u00e8s de 70 associations de patients \u00e0 travers le monde impliqu\u00e9es dans les maladies rares. Des \u00e9changes r\u00e9guliers avec les patients dans le monde entier nous permettent d\u2019identifier les besoins r\u00e9els et les d\u00e9fis auxquels les patients atteints de maladies rares, telles que la CBP, doivent faire face. L\u2019objectif est de mieux comprendre ce que les patients attendent d\u2019un traitement, le soutien dont ils ont besoin \u00e0 chaque \u00e9tape du parcours de soin et ce qui pourrait am\u00e9liorer la compr\u00e9hension des maladies rares du foie de mani\u00e8re plus sp\u00e9cifique.<\/p>\n\n\n\n

<\/p>\n\n\n\n

<\/p>\n\n\n\n

Faire toute la lumi\u00e8re sur les maladies rares du foie<\/strong><\/h2>\n\n\n\n


Ipsen lance une campagne d\u2019information aupr\u00e8s de la communaut\u00e9 m\u00e9dicale pour l\u2019\u00e9clairer sur les attentes r\u00e9elles des patients en termes de suivi et de qualit\u00e9 de vie. Nous sommes convaincus que la sensibilisation de toutes les parties prenantes sur les maladies rares du foie peut avoir un impact consid\u00e9rable : en r\u00e9duisant le d\u00e9lai de diagnostic, en am\u00e9liorant la prise en charge de la maladie, en faisant reculer la stigmatisation et en contribuant \u00e0 cr\u00e9er des syst\u00e8mes et des politiques de sant\u00e9 qui travaillent pour les patients et les familles.<\/p>\n\n\n\n

<\/p>\n\n\n\n

<\/p>\n\n\n\n

R\u00e9f\u00e9rences :<\/p>\n\n\n\n

    \n
  1. Plan national maladies rares 2018-2022. Partager l\u2019innovation, un diagnostic et un traitement pour
    chacun. Minist\u00e8re des Solidarit\u00e9s et de la Sant\u00e9, Minist\u00e8re de l\u2019Enseignement sup\u00e9rieur, de la
    Recherche et de l\u2019Innovation.<\/li>\n\n\n\n
  2. La cholangite biliaire primitive. Filfoie. Site internet. Consult\u00e9 le 28 novembre 2024. https:\/\/www.filfoie.com\/glossary\/cholangite-biliaire-primitive-cirrhosebiliaire-primitive\/#1503932571027-b8318d9f-dfb6<\/a><\/li>\n\n\n\n
  3. Protocole National de Diagnostic et de Soins (PNDS). Cholangite Biliaire Primitive Novembre 2921<\/li>\n<\/ol>\n\n\n\n\n
    \n
    \n \n
    \n
    \n \"Ic\u00f4ne<\/i>\n <\/div>\n
    \n

    <\/p>\n

    <\/p>\n

    ALLSC-FR-002137<\/p>\n<\/div>\n <\/div>\n <\/div>\n \n <\/div>\n <\/section>\n\n","protected":false},"excerpt":{"rendered":"

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