{"id":21,"date":"2022-11-03T18:34:48","date_gmt":"2022-11-03T18:34:48","guid":{"rendered":"https:\/\/achdsehcp-dev-001.azurewebsites.net\/en-us\/achondroplasia\/?page_id=21"},"modified":"2025-08-26T16:26:37","modified_gmt":"2025-08-26T16:26:37","slug":"prise-en-charge","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/fr-fr\/achondroplasia\/prise-en-charge\/","title":{"rendered":"Management"},"content":{"rendered":"
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Le soutien des patients achondroplases commence avec vous\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Parents, aidants et patients ont parfois besoin d\u2019une \u00e9quipe m\u00e9dicale solide d\u00e8s le premier jour1<\/sup><\/p>\n\t\t\t\t\t\t\t\t\n

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L\u2019achondroplasie entra\u00eene des complications<\/h2>\n

Les complications multisyst\u00e9miques n\u00e9cessitent une \u00e9quipe pluridisciplinaire. Pour garantir la bonne coordination des soins, il est essentiel que parents, aidants et patients puissent s\u2019appuyer sur un sp\u00e9cialiste ayant un r\u00f4le pivot dans l\u2019\u00e9quipe de soins.1-5<\/sup><\/p>\n <\/div>\n\n

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Le sp\u00e9cialiste qui est au c\u0153ur des soins du patient peut aider \u00e0 coordonner la prise en charge pluridisciplinaire<\/h2>\n

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Certaines complications de l\u2019achondroplasie sont pr\u00e9visibles, c\u2019est pourquoi il est essentiel d\u2019anticiper correctement la prise en charge \u00e0 long terme, et notamment de constituer un r\u00e9seau de professionnels de sant\u00e9 engag\u00e9s. Un r\u00e9seau pluridisciplinaire de sp\u00e9cialistes permettra d\u2019obtenir des recommandations personnalis\u00e9es et ainsi d\u2019aider \u00e0 limiter les complications multisyst\u00e9miques de l\u2019achondroplasie.1<\/sup><\/p>\n

T\u00e9l\u00e9chargez la feuille de travail de l’\u00e9quipe de soins<\/a><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Une ressource pour aider vos patients et leurs aidants \u00e0 \u00eatre inform\u00e9s<\/h3>\n

Achondroplasie.biomarin.com<\/a> est un site Web destin\u00e9 aux patients con\u00e7u pour aider les patients et leurs aidants \u00e0 en savoir plus sur l’achondroplasie, sa prise en charge et les ressources \u00e0 leur disposition, ainsi que pour voir comment diff\u00e9rentes familles soutiennent, s’adaptent et adoptent une vie qui leur est propre.<\/p>\n

Visitez achondroplasia.biomarin.com<\/a><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Complications de l’achondroplasie\n<\/h4>\n \n

Des complications courantes peuvent \u00eatre attendues tout au long de la vie d’un individu<\/p>\n \n <\/div>\n

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En savoir plus sur les complications de l’achondroplasie<\/a><\/p>\n <\/div>\n<\/div>\n\n

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Biblioth\u00e8que de ressources\n<\/h4>\n \n

Tout ce dont vous avez besoin pour approfondir vos connaissances sur l’achondroplasie<\/p>\n \n <\/div>\n

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Acc\u00e9der aux fiches d’information et aux ressources sur l’achondroplasie<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Testez vos connaissances\n<\/h2>\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t

Parce qu’il s’agit d’un facteur de risque de mort subite, la compression cervico-m\u00e9dullaire doit \u00eatre \u00e9troitement surveill\u00e9e dans quelles tranches d’\u00e2ge\u00a0?<\/p>\n\t\t\t\t\t\n

\n \n Enfant (5-14) et Adulte (18+)\n <\/a>\n \n Nourrisson (naissance-2) et tout-petit (3-4)\n <\/a>\n \n Enfant (5-14) et Adolescent (14-18)\n <\/a>\n \n Adolescent (14-18) et Adulte (18+)\n <\/a>\n <\/div>\n\t\t\t\t\t\n
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Soumettre<\/a><\/p>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\n\t\t\t\t

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Votre choix: %choice%\n<\/p>\n\t\t\t\t\t\n\t\t\t\t\t\t\t\t\t\t

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C’est exact !\n<\/h2>\n \n

Incorrect – La bonne r\u00e9ponse est %answer%\n<\/h2>\n \n

Les nourrissons et les tout-petits courent un risque accru de mort subite en raison de la compression cervico-m\u00e9dullaire au niveau du foramen magnum et les enfants atteints d’achondroplasie sont confront\u00e9s \u00e0 des complications musculo-squelettiques, oto-rhino-laryngologiques, neurologiques et vert\u00e9brales, dont un certain nombre peuvent n\u00e9cessiter une intervention chirurgicale.1-3<\/sup><\/p>\n <\/div>\n

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

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Fermer les r\u00e9f\u00e9rences<\/a><\/p>\n

R\u00e9f\u00e9rences :\n<\/h2>\n
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  1. Pauli RM. Achondroplasia: a comprehensive clinical review.\u202fOrphanet J Rare Dis. 2019;14(1):1. Published 2019 Jan 3. doi:10.1186\/s13023-018-0972-6.\n<\/span><\/li>\n
  2. Wynn J, King TM, Gambello MJ, Waller DK, Hecht JT. Mortality in achondroplasia study: a 42-year follow-up.\u202fAm J Med Genet A. 2007;143A(21):2502-2511. doi:10.1002\/ajmg.a.31919.\n<\/span><\/li>\n
  3. Ednick M, Tinkle BT, Phromchairak J, Egelhoff J, Amin R, Simakajornboon N. Sleep-related respiratory abnormalities and arousal pattern in achondroplasia during early infancy.\u202fJ Pediatr. 2009;155(4):510-515. doi:10.1016\/j.jpeds.2009.04.031.\n<\/span><\/li>\n <\/ol>\n <\/div>\n <\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t<\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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    R\u00e9f\u00e9rences :\n<\/h4>\n\t\t\t\t\t\t
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    1. Hoover-Fong J, Scott CI, Jones MC; Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics<\/em>. 2020;145(6):e20201010.\n<\/span><\/li>\n
    2. Ireland PJ, Pacey V, Zankl A, Edwards P, Johnston LM, Savarirayan R. Optimal management of complications associated with achondroplasia. Appl Clin Genet<\/em>em. 2014;7:117-125. Published online June 24, 2014. \n<\/span><\/li>\n
    3. Hunter AG, Bankier A, Rogers JG, Sillence D, Scott CI Jr. Medical complications of achondroplasia: a multicentre patient review. J Med Genet<\/em>. 1998;35(9):705-712. \n<\/span><\/li>\n
    4. Wright MJ, Irving MD. Clinical management of achondroplasia. Arch Dis Child<\/em>. 2012;97(2):129-134. \n<\/span><\/li>\n
    5. Unger S, Bonaf\u00e9 L, Gouze E. Current care and investigational therapies in achondroplasia. Curr Osteoporos Rep<\/em>. 2017;15(2):53-60.\n<\/span><\/li>\n <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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      Imprimer cette page<\/a><\/p>\n <\/div>\n <\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-21","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nGroupes de soutien, gestion et soins de l'achondroplasie<\/title>\n<meta name=\"description\" content=\"L'achondroplasie entra\u00eene des complications, il est donc essentiel de d\u00e9finir des attentes pour la prise en charge \u00e0 long terme, y compris la constitution d'un r\u00e9seau de soins engag\u00e9.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hcp.biomarin.com\/fr-fr\/achondroplasia\/prise-en-charge\/\" \/>\n<meta property=\"og:locale\" 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