{"id":71558,"date":"2023-12-05T16:02:05","date_gmt":"2023-12-05T15:02:05","guid":{"rendered":"https:\/\/www.derma.swiss\/patients\/maladies-rares-de-la-peau\/"},"modified":"2024-03-01T15:51:21","modified_gmt":"2024-03-01T14:51:21","slug":"maladies-rares-de-la-peau","status":"publish","type":"page","link":"https:\/\/www.derma.swiss\/fr\/patients\/maladies-rares-de-la-peau\/","title":{"rendered":"Maladies rares de la peau"},"content":{"rendered":"\n<p class=\"is-style-lead wp-block-paragraph\"><strong>En dermatologie, il existe plus de 1000 maladies rares de la peau reconnues. <\/strong>Le r\u00e9seau RareSkinCH relie les centres de r\u00e9f\u00e9rence et les organisations de patients afin d&rsquo;am\u00e9liorer la situation des soins pour les personnes concern\u00e9es par les maladies rares de la peau.<\/p>\n\n<p class=\"wp-block-paragraph\">On estime qu&rsquo;environ 20 % de tous les patients trait\u00e9s dans les services de dermatologie des universit\u00e9s sont atteints de maladies de peau rares. Il n&rsquo;existe gu\u00e8re de donn\u00e9es pr\u00e9cises sur la diffusion et la fr\u00e9quence de ces maladies rares en Suisse.  <\/p>\n\n<p class=\"wp-block-paragraph\">Les maladies cutan\u00e9es rares se caract\u00e9risent par des troubles fonctionnels de la peau. Souvent, les patients concern\u00e9s sont stigmatis\u00e9s. Les principaux groupes de maladies rares de la peau sont les suivants : Les ichtyoses, la k\u00e9ratodermie palmoplantaire, la dysplasie ectodermique, l&rsquo;\u00e9pidermolyse bulleuse, les anomalies pigmentaires telles que l&rsquo;albinisme, les anomalies vasculaires, y compris le lymph\u0153d\u00e8me, les naevus cong\u00e9nitaux, les maladies du tissu conjonctif, les maladies tumorales rares telles que les lymphomes cutan\u00e9s, les maladies auto-immunes, les syndromes auto-inflammatoires et les r\u00e9actions cutan\u00e9es toxiques-immunologiques graves.  <\/p>\n\n<p class=\"wp-block-paragraph\">Le r\u00e9seau <strong>RareSkinCH<\/strong> est une <a href=\"https:\/\/www.derma.swiss\/fr\/sgdv\/commissions\/\">commission de la SSDV<\/a> et fait partie de <a href=\"https:\/\/www.kosekschweiz.ch\/\" target=\"_blank\" rel=\"noreferrer noopener\">KOSEK<\/a>, le centre national de coordination pour les maladies rares. Le r\u00e9seau RareSkinCH encourage la collaboration entre les h\u00f4pitaux, les professionnels de la sant\u00e9 et les organisations de patients. L&rsquo;objectif est d&rsquo;optimiser la prise en charge globale des patients atteints de maladies cutan\u00e9es rares. Le r\u00e9seau veut que :   <\/p>\n\n<ul class=\"wp-block-list\">\n<li>le diagnostic correct et pr\u00e9coce, <\/li>\n\n\n\n<li>l&rsquo;acc\u00e8s \u00e0 des examens diagnostiques appropri\u00e9s, <\/li>\n\n\n\n<li>les soins m\u00e9dicaux dans des centres disposant d&rsquo;une large expertise, <\/li>\n\n\n\n<li>l&rsquo;acc\u00e8s \u00e0 de nouvelles th\u00e9rapies,<\/li>\n\n\n\n<li>pour la r\u00e9\u00e9ducation et <\/li>\n\n\n\n<li>pour une th\u00e9rapie de soutien et psychosociale<\/li>\n<\/ul>\n\n<ul class=\"wp-block-list\">\n<li><\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">sont garantis.<\/p>\n\n<h3 class=\"wp-block-heading\" id=\"referenzzentren-in-der-schweiz-fur-seltene-hautkrankheiten\">Centres de r\u00e9f\u00e9rence en Suisse pour maladies rares de la peau <\/h3>\n\n<p class=\"wp-block-paragraph\">Le traitement des maladies rares repr\u00e9sente un d\u00e9fi particulier. La plupart du temps, il faut une large offre th\u00e9rapeutique interdisciplinaire et la collaboration de plusieurs sp\u00e9cialistes qui disposent de connaissances et d&rsquo;exp\u00e9riences vari\u00e9es. Ce sont surtout les grands centres de sant\u00e9 qui peuvent le faire, c&rsquo;est-\u00e0-dire les h\u00f4pitaux universitaires et les grands h\u00f4pitaux cantonaux disposant d&rsquo;un service de dermatologie. Au sein du r\u00e9seau RareSkinCH, on distingue les centres de r\u00e9f\u00e9rence et les centres associ\u00e9s. Au sein de ce r\u00e9seau, il y a un \u00e9change r\u00e9gulier d&rsquo;exp\u00e9riences et des projets de recherche communs.     <\/p>\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/RareSkinCH-Netzwerk_2023-1200x694.png\" alt=\"\" class=\"wp-image-71426\"\/><\/figure>\n\n<h3 class=\"wp-block-heading\" id=\"sponsoren-der-nationalen-hautkrebskampagne\">Organisations pour patients avec maladies rares de la peau <\/h3>\n\n<p class=\"wp-block-paragraph\">Diff\u00e9rentes organisations de patients proposent aux personnes concern\u00e9es et \u00e0 leurs proches un soutien, un \u00e9change d&rsquo;exp\u00e9riences et d&rsquo;informations. <\/p>\n\n<ul class=\"wp-block-list\">\n<li><strong><a href=\"\" target=\"\" rel=\"noopener\">DEBRA Suisse<\/a>:<\/strong>L&rsquo;\u00e9pidermolyse bulleuse (EB) est une maladie de la peau cong\u00e9nitale, lourde de cons\u00e9quences et actuellement incurable. Dans le langage courant, les personnes atteintes sont appel\u00e9es \u00ab\u00a0enfants papillons\u00a0\u00bb, car leur peau est symboliquement aussi vuln\u00e9rable que les ailes d&rsquo;un papillon.  <\/li>\n\n\n\n<li><strong><a href=\"https:\/\/www.hautstigma.ch\/\" target=\"_blank\" rel=\"noreferrer noopener\">Hautstigma Suisse : <\/a><\/strong>L&rsquo;initiative Hautstigma a pour but de renforcer les enfants et les adolescents souffrant de l\u00e9sions cutan\u00e9es cong\u00e9nitales ou dues \u00e0 une maladie ou \u00e0 un accident et d&rsquo;am\u00e9liorer la qualit\u00e9 de vie des personnes concern\u00e9es et de leurs proches.<\/li>\n\n\n\n<li><a href=\"https:\/\/www.ektodermale-dysplasie.de\" target=\"_blank\" rel=\"noreferrer noopener\">Groupe d&rsquo;entraide pour la dysplasie ectodermique<\/a>: Les objectifs de l&rsquo;association sont, outre l&rsquo;information, le conseil et l&rsquo;\u00e9change d&rsquo;exp\u00e9riences des personnes concern\u00e9es par la dysplasie ectodermique, la mise en relation et l&rsquo;approfondissement des contacts entre les personnes concern\u00e9es elles-m\u00eames. <\/li>\n\n\n\n<li><a href=\"https:\/\/www.neurofibromatose.ch\/\" target=\"_blank\" rel=\"noreferrer noopener\">Association suisse de neurofibromatose SNFV ?<\/a>L&rsquo;association s&rsquo;occupe de tous les probl\u00e8mes sociaux et m\u00e9dicaux des personnes atteintes de neurofibromatose. <\/li>\n<\/ul>\n\n<div class=\"wp-block-derma-grid sponsors is-style-4-columns\">\n<figure class=\"wp-block-image size-large\"><a href=\"https:\/\/www.schmetterlingskinder.ch\/\"><img decoding=\"async\" src=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/Logo_Debra-1200x852.jpg\" alt=\"\" class=\"wp-image-71436\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-full\"><a href=\"https:\/\/www.hautstigma.ch\/\"><img loading=\"lazy\" decoding=\"async\" width=\"478\" height=\"138\" src=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/Hautstigma.jpg\" alt=\"Organisation de patients Hautstigma\" class=\"wp-image-71410\"\/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image size-full\"><a href=\"https:\/\/www.ektodermale-dysplasie.de\/links\/internationale-gruppen\/\"><img loading=\"lazy\" decoding=\"async\" width=\"240\" height=\"240\" src=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/ed-logo.png\" alt=\"Groupe d'entraide Dysplasie ectodermique\" class=\"wp-image-71414\" srcset=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/ed-logo.png 240w, https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/ed-logo-216x216.png 216w\" sizes=\"auto, (max-width: 240px) 100vw, 240px\" \/><\/a><\/figure>\n\n\n\n<figure class=\"wp-block-image aligncenter size-full\"><a href=\"https:\/\/www.neurofibromatose.ch\/\"><img loading=\"lazy\" decoding=\"async\" width=\"982\" height=\"608\" src=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/1657614322.png\" alt=\"Association de la neurofibromatose\" class=\"wp-image-71412\" srcset=\"https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/1657614322.png 982w, https:\/\/www.derma.swiss\/wp-content\/uploads\/2023\/11\/1657614322-349x216.png 349w\" sizes=\"auto, (max-width: 982px) 100vw, 982px\" \/><\/a><\/figure>\n<\/div>\n<div class=\"go-to-top\">\n    <hr>\n    <a href=\"#content\"><\/a>\n<\/div>\n<div class=\"wp-block-derma-grid is-style-2-columns\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>En dermatologie, il existe plus de 1000 maladies rares de la peau reconnues. Le r\u00e9seau RareSkinCH relie les centres de r\u00e9f\u00e9rence et les organisations de patients afin d&rsquo;am\u00e9liorer la situation [&hellip;]<\/p>\n","protected":false},"author":7958,"featured_media":58601,"parent":3372,"menu_order":3,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"_derma_icon_id":0,"_derma_icon_url":"","_derma_background_id":58600,"_derma_background_url":"https:\/\/www.derma.swiss\/wp-content\/uploads\/2022\/12\/banner_1156x500_shutterstock_107781305_histo.jpg","_derma_header_text":"Maladies rares de la peau","_derma_member_only":false,"_derma_show_original_image":false,"_derma_menu_title":"Maladies rares de la peau","_derma_menu":"main","_derma_background_color":"","_derma_narrow_congress_header":false,"_derma_is_full_width":false,"_derma_sliderimage1_id":0,"_derma_sliderimage1_url":"","_derma_sliderimage2_id":0,"_derma_sliderimage2_url":"","_derma_sliderimage3_id":0,"_derma_sliderimage3_url":"","_derma_slider_delay":3000,"_derma_slidertext1":"","_derma_slidertext2":"","_derma_slidertext3":"","_derma_sliderlink1":"","_derma_sliderlink2":"","_derma_sliderlink3":"","footnotes":""},"class_list":["post-71558","page","type-page","status-publish","has-post-thumbnail","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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