{"id":29948,"date":"2025-03-06T11:52:29","date_gmt":"2025-03-06T10:52:29","guid":{"rendered":"http:\/\/www.rcn-radio.org\/?p=29948"},"modified":"2025-03-06T13:55:54","modified_gmt":"2025-03-06T12:55:54","slug":"une-maladie-rare-cest-quoi","status":"publish","type":"post","link":"http:\/\/www.rcn-radio.org\/index.php\/une-maladie-rare-cest-quoi\/","title":{"rendered":"Une maladie rare, c\u2019est quoi ?"},"content":{"rendered":"<h1><span style=\"font-weight: 400;\"><img decoding=\"async\" loading=\"lazy\" class=\"size-medium wp-image-29950 alignleft\" src=\"http:\/\/www.rcn-radio.org\/wp-content\/uploads\/2025\/03\/bacteria-3658992_1280-300x165.jpg\" alt=\"\" width=\"300\" height=\"165\" srcset=\"http:\/\/www.rcn-radio.org\/wp-content\/uploads\/2025\/03\/bacteria-3658992_1280-300x165.jpg 300w, http:\/\/www.rcn-radio.org\/wp-content\/uploads\/2025\/03\/bacteria-3658992_1280-1024x563.jpg 1024w, http:\/\/www.rcn-radio.org\/wp-content\/uploads\/2025\/03\/bacteria-3658992_1280-768x422.jpg 768w, http:\/\/www.rcn-radio.org\/wp-content\/uploads\/2025\/03\/bacteria-3658992_1280.jpg 1280w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>En France, <\/span><span style=\"font-weight: 400;\">3 \u00e0 4 millions de personnes souffrent d\u2019une maladie rare. A ce jour, 6 000 \u00e0 8 000 maladies rares sont identifi\u00e9es. A l\u2019occasion de la Journ\u00e9e mondiale des maladies rares, le CHRU de Nancy et ses partenaires ont organis\u00e9 une journ\u00e9e d\u00e9di\u00e9e \u00e0 ces pathologies.<\/span><\/h1>\n<h4><span style=\"font-weight: 400;\">Le d\u00e9finition d\u2019une maladie rare est la m\u00eame partout dans le monde. \u201c<\/span><i><span style=\"font-weight: 400;\">On estime qu\u2019une maladie est rare si elle touche moins d\u2019une personne sur<\/span><\/i><span style=\"font-weight: 400;\"> 2000&Prime;,<\/span><span style=\"font-weight: 400;\"> indique le Docteur Laetitia Lambert, m\u00e9decin g\u00e9n\u00e9ticien au CHRU de Nancy. Les maladies rares touchent 3 \u00e0 4 millions de personnes en France : 6 000 \u00e0 8 000 maladies rares sont identifi\u00e9es \u00e0 ce jour. Le Docteur Laetitia Lambert constate ces derni\u00e8res ann\u00e9es une v\u00e9ritable mobilisation autour de la recherche concernant les maladies rares. \u201c<\/span><i><span style=\"font-weight: 400;\">Ces maladies sont rares, mais au total, les malades sont nombreux<\/span><\/i><span style=\"font-weight: 400;\">\u201d.\u00a0<\/span><\/h4>\n<h2><span style=\"font-weight: 400;\">Des maladies orphelines difficiles \u00e0 soigner\u00a0<\/span><\/h2>\n<h4><span style=\"font-weight: 400;\">Parmi les maladies rares les plus fr\u00e9quentes, on peut citer l&rsquo;amyotrophie spinale, la myopathie de Duchenne, l&rsquo;h\u00e9mophilie, la mucoviscidose ou\u00a0 la dr\u00e9panocytose. \u201c<\/span><i><span style=\"font-weight: 400;\">80% des maladies rares sont d\u2019origine g\u00e9n\u00e9tique<\/span><\/i><span style=\"font-weight: 400;\">, souligne le Docteur Lambert. <\/span><i><span style=\"font-weight: 400;\">Notamment la trisomie 21, le syndrome de Noonan ou le syndrome de d\u00e9l\u00e9tion 22q11<\/span><\/i><span style=\"font-weight: 400;\">\u201d. A noter qu\u2019une maladie rare n\u2019est pas forc\u00e9ment une maladie grave. <\/span><span style=\"font-weight: 400;\">\u201c<\/span><i><span style=\"font-weight: 400;\">Mais maladie rare veut souvent dire maladie orpheline, et 97% d\u2019entre elles n\u2019ont pas de traitement curatif<\/span><\/i><span style=\"font-weight: 400;\">\u201d.\u00a0<\/span><\/h4>\n","protected":false},"excerpt":{"rendered":"<p>En France, 3 \u00e0 4 millions de personnes souffrent d\u2019une maladie rare. A ce jour, 6 000 \u00e0 8 000 maladies rares sont identifi\u00e9es. A l\u2019occasion de la Journ\u00e9e mondiale des maladies rares, le CHRU de Nancy et ses partenaires ont organis\u00e9 une journ\u00e9e d\u00e9di\u00e9e \u00e0 ces pathologies. Le d\u00e9finition d\u2019une maladie rare est la [&hellip;]<\/p>\n","protected":false},"author":25,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[],"_links":{"self":[{"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/posts\/29948"}],"collection":[{"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/users\/25"}],"replies":[{"embeddable":true,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/comments?post=29948"}],"version-history":[{"count":6,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/posts\/29948\/revisions"}],"predecessor-version":[{"id":29998,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/posts\/29948\/revisions\/29998"}],"wp:attachment":[{"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/media?parent=29948"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/categories?post=29948"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.rcn-radio.org\/index.php\/wp-json\/wp\/v2\/tags?post=29948"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}