{"id":27614,"date":"2025-02-05T18:00:48","date_gmt":"2025-02-05T17:00:48","guid":{"rendered":"https:\/\/thibaultbazin.fr\/?p=27614"},"modified":"2025-02-12T17:39:11","modified_gmt":"2025-02-12T16:39:11","slug":"intervention-proposition-de-loi-visant-a-ameliorer-la-prise-en-charge-de-la-sclerose-laterale-amyotrophique-et-dautres-maladies-evolutives-graves","status":"publish","type":"post","link":"https:\/\/thibaultbazin.fr\/index.php\/2025\/02\/05\/intervention-proposition-de-loi-visant-a-ameliorer-la-prise-en-charge-de-la-sclerose-laterale-amyotrophique-et-dautres-maladies-evolutives-graves\/","title":{"rendered":"Intervention &#8211; Proposition de loi visant \u00e0 am\u00e9liorer la prise en charge de la scl\u00e9rose lat\u00e9rale amyotrophique et d\u2019autres maladies \u00e9volutives graves"},"content":{"rendered":"<p>Retrouvez en vid\u00e9o mon intervention en commission des affaires sociales sur la proposition de loi visant \u00e0 am\u00e9liorer la prise en charge de la scl\u00e9rose lat\u00e9rale amyotrophique et d\u2019autres maladies \u00e9volutives graves, ainsi que la r\u00e9ponse de la Rapporteure.<\/p>\n<p>\u00ab\u00a0Merci Madame la Pr\u00e9sidente,<\/p>\n<p>Madame la Rapporteure, Ch\u00e8re Josiane,<\/p>\n<p>Cette proposition de loi visant \u00e0 am\u00e9liorer la prise en charge de la scl\u00e9rose lat\u00e9rale amyotrophique et d\u2019autres maladies \u00e9volutives graves va dans le bon sens, en acc\u00e9l\u00e9rant la proc\u00e9dure et en accompagnant mieux financi\u00e8rement les personnes atteintes.<\/p>\n<p>Permettez-moi de vous interroger sur la concr\u00e9tisation esp\u00e9r\u00e9e de ces bonnes intentions, et donc sur la mise en \u0153uvre par la MDPH que vous connaissez bien.<\/p>\n<p>Nous savons que les d\u00e9lais varient selon les d\u00e9partements.<\/p>\n<p>Qu&rsquo;est-ce que cette proc\u00e9dure d\u00e9rogatoire impliquera du c\u00f4t\u00e9 des MDPH en termes d&rsquo;organisation, de proc\u00e9dure, de moyens,&#8230;surtout pour celles qui sont \u00e9loign\u00e9es des centres de r\u00e9f\u00e9rence alors que le protocole de diagnostic sur la scl\u00e9rose lat\u00e9rale amyotrophique recommande des bilans r\u00e9guliers adaptatifs ?<\/p>\n<div style=\"width: 426px;\" class=\"wp-video\"><!--[if lt IE 9]><script>document.createElement('video');<\/script><![endif]-->\n<video class=\"wp-video-shortcode\" id=\"video-27614-1\" width=\"426\" height=\"240\" preload=\"metadata\" controls=\"controls\"><source type=\"video\/mp4\" src=\"https:\/\/thibaultbazin.fr\/wp-content\/uploads\/2025\/02\/PPL-maladies-graves.mp4?_=1\" \/><a href=\"https:\/\/thibaultbazin.fr\/wp-content\/uploads\/2025\/02\/PPL-maladies-graves.mp4\">https:\/\/thibaultbazin.fr\/wp-content\/uploads\/2025\/02\/PPL-maladies-graves.mp4<\/a><\/video><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Retrouvez en vid\u00e9o mon intervention en commission des affaires sociales sur la proposition de loi visant \u00e0 am\u00e9liorer la prise en charge de la scl\u00e9rose lat\u00e9rale amyotrophique et d\u2019autres maladies \u00e9volutives graves, ainsi que la r\u00e9ponse de la Rapporteure. \u00ab\u00a0Merci Madame la Pr\u00e9sidente, Madame la Rapporteure, Ch\u00e8re Josiane, Cette proposition de loi visant \u00e0 am\u00e9liorer&hellip; <br \/> <a class=\"button small blue\" href=\"https:\/\/thibaultbazin.fr\/index.php\/2025\/02\/05\/intervention-proposition-de-loi-visant-a-ameliorer-la-prise-en-charge-de-la-sclerose-laterale-amyotrophique-et-dautres-maladies-evolutives-graves\/\">Lire la suite<\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[989],"tags":[],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/posts\/27614"}],"collection":[{"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/comments?post=27614"}],"version-history":[{"count":3,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/posts\/27614\/revisions"}],"predecessor-version":[{"id":27618,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/posts\/27614\/revisions\/27618"}],"wp:attachment":[{"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/media?parent=27614"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/categories?post=27614"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/thibaultbazin.fr\/index.php\/wp-json\/wp\/v2\/tags?post=27614"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}