{"id":77,"date":"2020-07-27T13:55:47","date_gmt":"2020-07-27T13:55:47","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/07\/27\/2020-7-27-medical-monday-an-inspiring-story-of-mom-advocacy\/"},"modified":"2023-08-01T19:26:42","modified_gmt":"2023-08-01T19:26:42","slug":"2020-7-27-lundi-medical-une-histoire-inspirante-dune-mere-qui-defend-sa-cause","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2020\/07\/27\/2020-7-27-lundi-medical-une-histoire-inspirante-dune-mere-qui-defend-sa-cause\/","title":{"rendered":"Lundi m\u00e9dical : L'histoire inspirante d'une m\u00e8re qui d\u00e9fend sa cause"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Le lundi m\u00e9dical d'aujourd'hui met en lumi\u00e8re un podcast r\u00e9cent produit par Eugenie Hsu, membre du conseil d'administration de la RAWF et d\u00e9fenseur des droits des m\u00e8res, qui interviewe Maria Picone de l'Institut de recherche sur les maladies infectieuses. <a href=\"https:\/\/trend.community\/\" target=\"_blank\" rel=\"noopener\">TREND<\/a>. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Lorsqu'elle a appris que sa fille \u00e9tait atteinte d'une maladie rare, le syndrome de Prader Willi, Maria a mis toute son \u00e9nergie \u00e0 apprendre tout ce qu'elle pouvait pour am\u00e9liorer la qualit\u00e9 de vie de sa fille. Forte de son exp\u00e9rience en programmation informatique, elle a lanc\u00e9 TREND, une organisation qui \"\u00e9coute\" les conversations dans les groupes de soutien sur les m\u00e9dias sociaux afin de d\u00e9terminer ce qui est discut\u00e9 et de produire des analyses bas\u00e9es sur ces discussions pour aider \u00e0 orienter la recherche dans le domaine des maladies rares. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Gr\u00e2ce \u00e0 cela, la communaut\u00e9 du syndrome de Prader-Willi a pu d\u00e9terminer qu'il existait un traitement utilis\u00e9 en Europe pour la narcolepsie, un probl\u00e8me que l'on peut rencontrer chez ces patients, et gr\u00e2ce \u00e0 la d\u00e9fense de leurs int\u00e9r\u00eats, les parents ont pu faire venir ce m\u00e9dicament aux \u00c9tats-Unis, o\u00f9 il a finalement \u00e9t\u00e9 approuv\u00e9 par la FDA pour \u00eatre utilis\u00e9 dans cette situation.   <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Lorsqu'on lui demande ce qu'elle conseillerait aux gens pour qu'ils soient de bons d\u00e9fenseurs des patients, Maria r\u00e9pond : \"Je pense que c'est vraiment de continuer \u00e0 chercher des gens qui peuvent vous aider sp\u00e9cifiquement et de ne pas supposer que vous entrez dans cette case. Les m\u00e9decins ne savent pas toujours ce qui est possible.  \u00c9coutez le podcast Dr. DIY avec Maria Picone, PDG de TREND Community. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\u00c9couter le podcast :<\/p>\n<\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">\u00c9couter le podcast :<\/p>\n<\/div>\n<p><iframe allow=\"autoplay; fullscreen\" scrolling=\"no\" data-image-dimensions=\"400x102\" allowfullscreen=\"true\" src=\"\/\/cdn.embedly.com\/widgets\/media.html?src=https%3A%2F%2Fanchor.fm%2Feuge3%2Fembed%2Fepisodes%2FMaria-Picone--CEO-of-TREND-Community-eegrjc&amp;display_name=Anchor+FM+Inc.&amp;url=https%3A%2F%2Fanchor.fm%2Feuge3%2Fepisodes%2FMaria-Picone--CEO-of-TREND-Community-eegrjc&amp;image=https%3A%2F%2Fd3t3ozftmdmh3i.cloudfront.net%2Fproduction%2Fpodcast_uploaded_nologo400%2F2457471%2F2457471-1588791268864-5d3db99c84622.jpg&amp;key=61d05c9d54e8455ea7a9677c366be814&amp;type=text%2Fhtml&amp;schema=anchor&amp;wmode=opaque\" width=\"400\" data-embed=\"true\" frameborder=\"0\" title=\"Anchor FM Inc.\" class=\"embedly-embed\" height=\"102\"><\/iframe><\/p>\n<div  class=\"video-caption-wrapper\">\n<div class=\"video-caption\">\n<p>Maria Picone d\u00e9fend les int\u00e9r\u00eats des patients et est cofondatrice et PDG de TREND Community, une entreprise de sant\u00e9 num\u00e9rique dont la mission est d'am\u00e9liorer la qualit\u00e9 de vie de tous ceux qui vivent avec une maladie rare ou chronique : WWW.TREND.Community TREND utilise la technologie pour tirer parti des m\u00e9dias sociaux afin de mieux comprendre le fardeau des maladies et d'acc\u00e9l\u00e9rer la d\u00e9couverte et la mise \u00e0 disposition de nouveaux traitements.<\/p>\n<\/div>\n<\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Vous pouvez consulter tous les <a href=\"https:\/\/open.spotify.com\/show\/2kN9S0V34blh7SC2fgmFqF\">Les podcasts de Dr. DIY sur Spotify<\/a>.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">Le lundi m\u00e9dical d'aujourd'hui met en lumi\u00e8re un podcast r\u00e9cent produit par Eugenie Hsu, membre du conseil d'administration de la RAWF et d\u00e9fenseur des droits des m\u00e8res, qui interviewe Maria Picone de l'Institut de recherche sur les maladies infectieuses. <a href=\"https:\/\/trend.community\/\" target=\"_blank\" rel=\"noopener\">TREND<\/a>.<\/p>","protected":false},"author":6,"featured_media":6705,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,36,1],"tags":[],"class_list":["post-77","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-caregivers","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.0 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Medical Monday: An Inspiring Story of Mom Advocacy - Raymond A. 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