{"id":18548,"date":"2025-11-25T17:06:34","date_gmt":"2025-11-25T16:06:34","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=18548"},"modified":"2026-03-16T17:08:31","modified_gmt":"2026-03-16T16:08:31","slug":"le-role-des-ern-dans-le-renforcement-de-la-competitivite-de-lue","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/le-role-des-ern-dans-le-renforcement-de-la-competitivite-de-lue\/","title":{"rendered":"Le r\u00f4le des ERN dans le renforcement de la comp\u00e9titivit\u00e9 de l&rsquo;UE"},"content":{"rendered":"<p>Together for Rare Diseases (Together4RD) a publi\u00e9 un rapport sur l\u2019utilisation des partenariats public-priv\u00e9 (PPP) dans la recherche sur les maladies rares, ainsi que sur le r\u00f4le que doivent jouer les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN) dans ce contexte afin de stimuler la comp\u00e9titivit\u00e9 europ\u00e9enne et de favoriser le progr\u00e8s pour la communaut\u00e9 des maladies rares. Le rapport propose un certain nombre d\u2019actions visant \u00e0 faciliter la collaboration entre les ERNs et l\u2019industrie, acc\u00e9l\u00e9rant ainsi l\u2019innovation et am\u00e9liorant la disponibilit\u00e9 des traitements et des soins pour les patients. Certaines des actions d\u00e9crites dans le rapport sont les suivantes :<\/p>\n<ul>\n<li>Veiller \u00e0 ce que la loi sur les biotechnologies, la strat\u00e9gie pour les sciences de la vie et le cadre financier pluriannuel encouragent la recherche collaborative et fournissent des ressources aux ERNs et \u00e0 l\u2019industrie pour conclure des partenariats de recherche ;<\/li>\n<li>R\u00e9viser la d\u00e9claration 2019 du Conseil des \u00c9tats membres des ERNs pour autoriser et encourager explicitement la collaboration entre les ERNs et l\u2019industrie en mati\u00e8re de recherche et de donn\u00e9es ;<\/li>\n<li>D\u00e9velopper et d\u00e9ployer un cadre normalis\u00e9 de contrats et de partage de donn\u00e9es \u00e0 l\u2019\u00e9chelle de l\u2019UE pour les partenariats ERN-industrie ;<\/li>\n<li>Aider les ERNs \u00e0 devenir des entit\u00e9s juridiques ou \u00e0 former des structures de gouvernance partag\u00e9e pour rationaliser les partenariats ;<\/li>\n<li>\u00c9tablir un plan d\u2019action europ\u00e9en sur les maladies rares avec des objectifs mesurables et un financement stable.<\/li>\n<\/ul>\n<p>En combinant l\u2019expertise des ERNs, les capacit\u00e9s et les ressources de l\u2019industrie et la contribution des communaut\u00e9s de patients, ce type de PPP a le potentiel d\u2019apporter des changements concrets et d\u2019am\u00e9liorer les r\u00e9sultats en mati\u00e8re de sant\u00e9 pour tous les Europ\u00e9ens vivant avec une maladie rare. (\u00a9 Orphanews 2025.11.25)<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Together for Rare Diseases (Together4RD) a publi\u00e9 un rapport sur l\u2019utilisation des partenariats public-priv\u00e9 (PPP) dans la recherche sur les maladies rares, ainsi que sur le r\u00f4le que doivent jouer les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERN) dans ce contexte afin de stimuler la comp\u00e9titivit\u00e9 europ\u00e9enne et de favoriser le progr\u00e8s pour la communaut\u00e9 des maladies [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":18509,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[63,61,66],"tags":[],"class_list":["post-18548","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-legislation-society-fr","category-quoi-de-neuf","category-recherche-medecine-genetique"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - 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