{"id":1688,"date":"2023-10-11T08:53:00","date_gmt":"2023-10-11T06:53:00","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/replay-du-webinaire-international-sur-lamylose-aa\/"},"modified":"2026-09-29T15:32:16","modified_gmt":"2026-09-29T13:32:16","slug":"replay-du-webinaire-international-sur-lamylose-aa","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/replay-du-webinaire-international-sur-lamylose-aa\/","title":{"rendered":"Replay du webinaire international sur l\u2019amylose AA"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Dans le monde des maladies rares, chaque connaissance est pr\u00e9cieuse. Patients, aidants, chercheurs et militants associatifs cherchent sans cesse \u00e0 mieux comprendre l\u2019acc\u00e8s au march\u00e9 des traitements, le remboursement et les r\u00e8gles complexes qui encadrent les relations entre industriels et associations de patients atteints d\u2019amylose. Vous avez manqu\u00e9 notre dernier webinaire\u202f? Pas d\u2019inqui\u00e9tude\u00a0: le replay vid\u00e9o est disponible sur YouTube.<\/p>\n\n<p class=\"wp-block-paragraph\">Dur\u00e9e\u00a0: deux sessions + 30 minutes de questions-r\u00e9ponses<\/p>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"International Webinar Amyloidosis AA\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/fchDUnbGczc?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:41px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<h3 class=\"wp-block-heading\"><strong>Session 1\u00a0: mieux comprendre l\u2019acc\u00e8s au march\u00e9 et le remboursement des traitements<\/strong><\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>Lors de la premi\u00e8re session, nos experts ont explor\u00e9 en profondeur le labyrinthe de l\u2019acc\u00e8s au march\u00e9 et du remboursement des traitements de l\u2019amylose AA. Nous avons pr\u00e9sent\u00e9 des strat\u00e9gies pour mieux comprendre et surmonter les difficult\u00e9s que rencontrent souvent les personnes, les familles et les associations de patients. Parmi les points forts\u00a0:<\/p>\n\n<p class=\"wp-block-paragraph\">Les d\u00e9fis de l\u2019acc\u00e8s au march\u00e9\u00a0: la session s\u2019ouvre sur les obstacles propres aux traitements de l\u2019amylose AA sur le march\u00e9, dont le prix, le financement et la distribution.<br\/>Les strat\u00e9gies de remboursement\u00a0: des experts pr\u00e9sentent des strat\u00e9gies de remboursement efficaces, en soulignant l\u2019importance du plaidoyer des patients et des approches fond\u00e9es sur les donn\u00e9es.<br\/>Des approches centr\u00e9es sur le patient\u00a0: d\u00e9couvrez comment placer les patients au centre des discussions sur l\u2019acc\u00e8s peut influencer les politiques et faire \u00e9voluer les choses.<\/p>\n\n<h3 class=\"wp-block-heading\"><br\/>Session 2\u00a0: les r\u00e8gles et contraintes qui encadrent les relations entre industriels et associations de patients<\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>La deuxi\u00e8me session explore l\u2019ensemble complexe de r\u00e8gles, d\u2019exigences \u00e9thiques et de bonnes pratiques qui encadrent les relations entre laboratoires pharmaceutiques et associations de patients. Parmi les points forts\u00a0:<\/p>\n\n<p class=\"wp-block-paragraph\">Transparence et collaboration\u00a0: comment industriels et associations de patients peuvent collaborer dans le respect de r\u00e8gles \u00e9thiques strictes et d\u2019exigences de transparence.<br\/>Cadres juridiques\u00a0: mieux comprendre les cadres juridiques qui encadrent les \u00e9changes et les accords entre ces deux acteurs essentiels.<br\/>\u00c9tudes de cas\u00a0: des exemples concrets de partenariats r\u00e9ussis montrent les meilleures fa\u00e7ons de travailler ensemble au b\u00e9n\u00e9fice des patients atteints de maladies rares.<\/p>\n\n<h3 class=\"wp-block-heading\"><br\/>30 minutes de questions-r\u00e9ponses<\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>Apr\u00e8s ces deux sessions riches, nos experts ont \u00e9chang\u00e9 avec un public tr\u00e8s impliqu\u00e9 lors d\u2019une s\u00e9ance de questions-r\u00e9ponses de 30 minutes. Les participants ont pu poser directement leurs questions aux intervenants et obtenir des r\u00e9ponses personnalis\u00e9es.<\/p>\n\n<p class=\"wp-block-paragraph\"><br\/>Le replay de ce webinaire \u00e9clairant est d\u00e9sormais disponible sur notre cha\u00eene YouTube, pour en profiter quand vous le souhaitez. Que vous soyez patient, aidant, militant associatif ou professionnel de sant\u00e9, ce webinaire vous apporte les connaissances et les outils n\u00e9cessaires pour comprendre l\u2019acc\u00e8s au march\u00e9 des traitements des maladies rares et les relations entre industriels et associations de patients.<\/p>\n\n<p class=\"wp-block-paragraph\">Rejoignez-nous sur le chemin d\u2019un avenir meilleur pour les communaut\u00e9s de l\u2019amylose. Regardez le replay d\u00e8s aujourd\u2019hui et donnez-vous les moyens d\u2019agir pour les personnes touch\u00e9es par ces maladies difficiles.<\/p>\n\n<p class=\"wp-block-paragraph\">Ensemble, nous pouvons faire bouger les choses et am\u00e9liorer la vie des patients atteints d\u2019amylose dans le monde entier. Restez inform\u00e9s, gardez le pouvoir d\u2019agir et restez en lien avec l\u2019Amyloidosis Alliance.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Replay du webinaire international sur l\u2019amylose AA\u00a0: acc\u00e8s au march\u00e9 des traitements, remboursement et r\u00e8gles encadrant les relations entre industriels et organisations de patients.<\/p>\n","protected":false},"author":1,"featured_media":1689,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1688","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Replay du webinaire international sur l\u2019amylose AA<\/title>\n<meta name=\"description\" content=\"Replay du webinaire international sur l\u2019amylose 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