{"id":4359,"date":"2024-06-05T15:39:51","date_gmt":"2024-06-05T13:39:51","guid":{"rendered":"http:\/\/blog.lallianse.com\/?p=4359"},"modified":"2024-10-16T11:41:33","modified_gmt":"2024-10-16T09:41:33","slug":"fondation-maladies-rares","status":"publish","type":"post","link":"https:\/\/blog.lallianse.com\/index.php\/fondation-maladies-rares\/","title":{"rendered":"Fondation Maladies Rares x LallianSe"},"content":{"rendered":"\n<h2 class=\"wp-block-heading has-text-color has-link-color has-medium-font-size wp-elements-619bd51dfb655bdd4d44bbd0fb465436\" style=\"color:#d1b04c\"><strong>Juin 2024<\/strong><\/h2>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-ddef3156a5a9ccefe2fb05a2b3c2326d\" style=\"color:#546a7b\">Souvenez-vous, il y a quelques semaines nous annoncions le renouvellement de notre <strong>#collaboration<\/strong> avec la <a href=\"https:\/\/www.linkedin.com\/company\/11090258\/admin\/feed\/posts\/#\" target=\"_blank\" rel=\"noreferrer noopener\">Fondation Maladies Rares<\/a>, dans le cadre des ateliers de co-design en e-sant\u00e9 &amp; maladies rares. <a href=\"https:\/\/www.linkedin.com\/company\/11090258\/admin\/feed\/posts\/#\" target=\"_blank\" rel=\"noreferrer noopener\">Julie Rachline<\/a> a pu contribuer avec son <strong>#expertise<\/strong> au projet \u2018SCLER-AIME\u2019, d\u00e9sign\u00e9 laur\u00e9at cette ann\u00e9e.<\/p>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-0076bc3a8be11d8f35271b697bcbb746\" style=\"color:#546a7b\">L\u2019occasion pour nous de faire le point sur notre partenariat. Pourquoi&nbsp;?!<\/p>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-3706371b91e7e60851891afd5257c532\" style=\"color:#546a7b\">\ud83c\udfaf Pour aligner nos objectifs et nos valeurs, nos efforts sont guid\u00e9s une vision partag\u00e9es : offrir des solutions concr\u00e8tes et durables aux d\u00e9fis complexes pos\u00e9s par les <strong>#maladiesrares<\/strong>.<\/p>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-f646aeaac640fa689e42bfe701d830c0\" style=\"color:#546a7b\">\ud83d\ude80 Pour pr\u00e9parer l\u2019avenir ensemble, anticiper les futurs d\u00e9fis et enjeux \u00e0 venir et permettre au plus grand nombre une meilleure sant\u00e9.<\/p>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-5056534b1cf93b84e2766a1ad868a815\" style=\"color:#546a7b\">Retrouvez l\u2019<strong>#ITW<\/strong> crois\u00e9e de\u00a0<a href=\"https:\/\/www.linkedin.com\/company\/11090258\/admin\/feed\/posts\/#\" target=\"_blank\" rel=\"noreferrer noopener\">Julie<\/a> et avec <a href=\"https:\/\/www.linkedin.com\/company\/11090258\/admin\/feed\/posts\/#\" target=\"_blank\" rel=\"noreferrer noopener\">pierre espinoza<\/a> ci-dessous :<\/p>\n\n\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=\"@Fondationmaladiesrares  x LallianSe (version longue)\" width=\"840\" height=\"473\" src=\"https:\/\/www.youtube.com\/embed\/_svvm3q8l8U?list=PLCmrxoC_xfLlpb4SnHis3OmWW8qALahfT\" 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\n\n<p class=\"has-text-color has-link-color has-medium-font-size wp-elements-dcba8c9c19baf180af89dc04ed51fd45\" style=\"color:#546a7b\">Version courte \u00e9galement disponible :<\/p>\n\n\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=\"@Fondation Maladies Rares x LallianSe version courte\" width=\"840\" height=\"473\" src=\"https:\/\/www.youtube.com\/embed\/D5MCjg3WpWY?list=PLCmrxoC_xfLlpb4SnHis3OmWW8qALahfT\" 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\n\n<h2 class=\"wp-block-heading has-text-color has-link-color has-medium-font-size wp-elements-b1e7e4c379ff4dc24678bae3c3d42045\" style=\"color:#d1b04c\"><strong>Avril 2024<\/strong><\/h2>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-a62be46335b2b3690649526f82a70f96\" style=\"color:#546a7b\">Pour la 3\u00e8me ann\u00e9e cons\u00e9cutive, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAECmSgBhm8ircL_TCzbzIkb0FtQKasJau0\">Julie<\/a> a contribu\u00e9 aux ateliers de co-design en e-sant\u00e9 &amp; maladies rares organis\u00e9 par la Fondation Maladies Rares.<br><br>Chez <a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=lallianse&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7186029372259115010\">#LallianSe<\/a>, notre <a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=exp%C3%A9rience&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7186029372259115010\">#exp\u00e9rience<\/a> dans la construction des th\u00e8ses d\u2019investissements permet de mettre en lumi\u00e8re les dimensions et jalons les plus pertinents de chaque projet, offrant ainsi un \u00e9clairage n\u00e9cessaire et de la cr\u00e9ation de valeur pour les investisseurs.<br><br>Nous sommes ravis de voir le projet \u2018SCLER-AIME\u2019 port\u00e9 par <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAoYOfcB-HWpwDsMTxN0OH5CoMIdh7ypuc8\">Clo\u00e9 Comarmond<\/a>, interniste \u00e0 l\u2019h\u00f4pital Lariboisi\u00e8re de l\u2019<a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=aphp&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7186029372259115010\">#APHP<\/a> d\u00e9sign\u00e9 <a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=laur%C3%A9at&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7186029372259115010\">#laur\u00e9at<\/a> avec un soutien de 5000\u20ac par les participants aux c\u00f4t\u00e9s de <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAECmSgBhm8ircL_TCzbzIkb0FtQKasJau0\">Julie Rachline<\/a>&nbsp;: <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAADiX0ABhy3EEFiAGqlrCx6ZE9Hx4aOmuMg\">Alice PARNEL<\/a> \u2022 <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAdFYB8B788DXjZ6Fjpo3g6qkA-0AQ5BJfQ\">Marie-Christine Jaulent<\/a> \u2022 <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAB0fgawBHRu7MpUadDeIBk4fivLEX4bBvXQ\">Elise L.<\/a><br><br>Merci \u00e0 l\u2019\u00e9quipe de la Fondation de nous avoir \u00e0 nouveau sollicit\u00e9&nbsp;: Dr Pierre Espinoza, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAcSSFABY4ngRzgJr9i1l30waRRdDf5O4W8\">Ga\u00eblle Dombu Smeets<\/a> et <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAACB9ysBxzkPIc4ccf0uYHiC1HxAh6UF2V8\">Pascale Milani<\/a>.<br><br><a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAECmSgBhm8ircL_TCzbzIkb0FtQKasJau0\">Julie Rachline<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAf2SPAB3g9Q7gaFE2KuFVTUOfkwjgR2BK8\">Pascale Maisonneuve<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAB5bOGgBpLozanx74Wti3Ztwn9hNgW-jhJE\">Shahrzad Moradi<\/a> <a href=\"https:\/\/www.linkedin.com\/in\/ACoAADcBe88BHr85UaVbqKZBnouKe2RVAIz5cy4\">Eve Le Bail<\/a> <a href=\"https:\/\/www.linkedin.com\/in\/ACoAACP9xsYBUyOuhoXYHSjocBnANbWURlgyz_4\">Th\u00e9o Pezel<\/a> <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAd8y4QBGWlEEMC4P1PVHGWNPdGH7McMnTg\">Damien S\u00e8ne<\/a> <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAACtW9sBP_-_o25W6nmyC03XTx94B0Cu4P4\">St\u00e9phane Mouly<\/a><\/p>\n\n\n\n<iframe loading=\"lazy\" src=\"https:\/\/www.linkedin.com\/embed\/feed\/update\/urn:li:share:7185575650135613441\" height=\"864\" width=\"504\" frameborder=\"0\" allowfullscreen=\"\" title=\"Post int\u00e9gr\u00e9\"><\/iframe>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading has-text-color has-link-color has-medium-font-size wp-elements-3959c0c6698e6efdef816dd844bcd8a9\" style=\"color:#d1b04c\"><strong>Avril 202<\/strong>3<\/h2>\n\n\n\n<p class=\"has-text-align-justify has-text-color has-link-color wp-elements-36f3a698889b96a610b5da45fb20b032\" style=\"color:#546a7b\">Souvenez-vous, nous vous annoncions en d\u00e9but d\u2019ann\u00e9e le renouvellement de notre <a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=collaboration&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7054104667881906176\">#collaboration<\/a> avec la Fondation Maladies Rares dans le cadre des ateliers de co-design en e-sant\u00e9 &amp; maladies rares pour des projets en phase pr\u00e9coce d\u2019\u00e9tude.<br><br>Quels sont les objectifs de ces ateliers&nbsp;?<br><br>\ud83c\udfaf\u200aAider \u00e0 l\u2019amor\u00e7age de projets innovants par l\u2019identification des ressources n\u00e9cessaires et des \u00e9tapes cl\u00e9s \u00e0 leur mise en \u0153uvre<br>\ud83c\udfaf Adopter une approche collaborative et stimuler le dialogue inter-m\u00e9tiers d\u00e8s les premi\u00e8res id\u00e9es<br>\ud83c\udfaf Favoriser les discussions avec des partenaires et Experts qui maitrisent le sujet<br><br>Pourquoi est-ce important pour nous&nbsp;?<br><br>\ud83d\udcaa\u200aPour favoriser l\u2019\u00e9mergence des innovations port\u00e9es par les professionnels de sant\u00e9<br>\ud83d\ude4c\u200aPour soutenir l\u2019am\u00e9lioration du parcours de soins et de vie des personnes atteintes d\u2019une maladie rare<br>\ud83e\udd1d\u200aPour \u00eatre en coh\u00e9rence avec nos valeurs et nos initiatives terrain<br><br>C\u2019est en tant qu\u2019Experte LallianSe que <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAECmSgBhm8ircL_TCzbzIkb0FtQKasJau0\">Julie Rachline<\/a> a pu apporter son <a href=\"https:\/\/www.linkedin.com\/feed\/hashtag\/?keywords=expertise&amp;highlightedUpdateUrns=urn%3Ali%3Aactivity%3A7054104667881906176\">#expertise<\/a> au projet \u2018Brain Mouv\u2019 port\u00e9 par <a href=\"https:\/\/www.linkedin.com\/in\/ACoAACquxVABCrRR0_I8rBpNk096GYXsXxM4cac\">Iris Marolleau<\/a>.<br><br>Merci aux Experts pr\u00e9sents&nbsp;: <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAWDNs0B4dHf6dFXOtLH0Z5b3i39aqFXCS8\">Charlotte Douard<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAutIr4BhlHUniFLH0BRiKzSqxBlvFKGJkc\">Samuel Pouplin<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAB8HMjYBdxJhDlPYWyJfFZr0_k-3baRUrNw\">Ariane David<\/a> et <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAG2e7MBq3oPdqTmW-U4EZLzTakk9tIbNjY\">Sandrine Hudson Pradier<\/a> ainsi qu\u2019\u00e0 l\u2019\u00e9quipe de la Fondation&nbsp;: <a href=\"https:\/\/www.linkedin.com\/in\/ACoAADWTr7IBQi2O9UI5990NypYab39SBj29Oi4\">C\u00e9line Bordet<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAOhGmUBW8jmMJTSCSsZZYwmit274o-VYU0\">pierre espinoza<\/a>, <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAAcSSFABY4ngRzgJr9i1l30waRRdDf5O4W8\">Ga\u00eblle Dombu Smeets<\/a> et <a href=\"https:\/\/www.linkedin.com\/in\/ACoAAACB9ysBxzkPIc4ccf0uYHiC1HxAh6UF2V8\">Pascale Milani<\/a>.<\/p>\n\n\n\n<iframe loading=\"lazy\" src=\"https:\/\/www.linkedin.com\/embed\/feed\/update\/urn:li:ugcPost:7009098807946657792\" height=\"841\" width=\"504\" frameborder=\"0\" allowfullscreen=\"\" title=\"Post int\u00e9gr\u00e9\"><\/iframe>\n","protected":false},"excerpt":{"rendered":"<p>Juin 2024 Souvenez-vous, il y a quelques semaines nous annoncions le renouvellement de notre #collaboration avec la Fondation Maladies Rares, dans le cadre des ateliers de co-design en e-sant\u00e9 &amp; maladies rares. Julie Rachline a pu contribuer avec son #expertise au projet \u2018SCLER-AIME\u2019, d\u00e9sign\u00e9 laur\u00e9at cette ann\u00e9e. L\u2019occasion pour nous de faire le point sur &hellip; <a href=\"https:\/\/blog.lallianse.com\/index.php\/fondation-maladies-rares\/\" class=\"more-link\">Continuer la lecture<span class=\"screen-reader-text\"> de &laquo;&nbsp;Fondation Maladies Rares x LallianSe&nbsp;&raquo;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"footnotes":"","_jetpack_memberships_contains_paid_content":false},"categories":[173,238],"tags":[],"jetpack_sharing_enabled":true,"jetpack_featured_media_url":"","jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/posts\/4359"}],"collection":[{"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/comments?post=4359"}],"version-history":[{"count":8,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/posts\/4359\/revisions"}],"predecessor-version":[{"id":4502,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/posts\/4359\/revisions\/4502"}],"wp:attachment":[{"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/media?parent=4359"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/categories?post=4359"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.lallianse.com\/index.php\/wp-json\/wp\/v2\/tags?post=4359"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}