{"id":3330,"date":"2024-01-08T11:52:51","date_gmt":"2024-01-08T10:52:51","guid":{"rendered":"https:\/\/afpca.fr\/site\/?p=3330"},"modified":"2024-01-08T11:59:06","modified_gmt":"2024-01-08T10:59:06","slug":"octobre-2023-lettre-eurordis","status":"publish","type":"post","link":"https:\/\/afpca.fr\/site\/octobre-2023-lettre-eurordis\/","title":{"rendered":"Octobre 2023 Lettre Eurordis"},"content":{"rendered":"\t\t
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\u00a0<\/td>

La Newsletter des membres EURORDIS<\/h2>

Les actus r\u00e9serv\u00e9es aux membres d\u2019EURORDIS,
directement dans votre messagerie deux fois par mois<\/h3><\/td><\/tr><\/tbody><\/table><\/td><\/tr>

Chers Membres,<\/span><\/p>

Aujourd\u2019hui m\u00eame,<\/strong> les d\u00e9cideurs politiques et dirigeants de l\u2019UE se r\u00e9unissent \u00e0 Bilbao, en Espagne, pour la Conf\u00e9rence sur les maladies rares et les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence<\/u><\/a><\/em> qui se tient dans le cadre de la pr\u00e9sidence espagnole du Conseil de l\u2019Union europ\u00e9enne. \u00c0 l\u2019ordre du jour\u00a0: aborder plusieurs grands d\u00e9fis du cadre d\u2019action europ\u00e9en<\/strong> sur les maladies rares, envisager l\u2019avenir des R\u00e9seaux Europ\u00e9ens de R\u00e9f\u00e9rence<\/strong>, et r\u00e9pondre aux appels \u00e0 l\u2019action de la R\u00e9publique tch\u00e8que, qui a pr\u00e9sid\u00e9 le Conseil de l\u2019UE juste avant l\u2019Espagne.<\/p>

Yann Le Cam<\/strong>, notre Chief Executive Officer, compte parmi les coll\u00e8gues d\u2019EURORDIS<\/u><\/a><\/em> qui interviendront \u00e0 la conf\u00e9rence pour souligner combien il est n\u00e9cessaire de veiller \u00e0 ce que les besoins non satisfaits des patients atteints de maladie rare et de leurs familles restent au c\u0153ur des objectifs de la politique europ\u00e9enne.<\/p>

En amont de la conf\u00e9rence, EURORDIS et les 24\u00a0RERs ont r\u00e9dig\u00e9 une lettre ouverte aux institutions de l\u2019UE<\/u><\/a><\/em> \u00e9num\u00e9rant les raisons pour lesquelles leurs repr\u00e9sentants doivent rester \u00ab\u00a0aux c\u00f4t\u00e9s\u00a0\u00bb des r\u00e9seaux et leur renouveler leur soutien dans les ann\u00e9es \u00e0 venir.<\/p>

Vous ne pouvez pas faire le d\u00e9placement \u00e0 Bilbao\u00a0? L\u2019\u00e9v\u00e8nement sera retransmis en direct<\/u><\/a><\/em> en anglais et en espagnol.<\/p>

Fait marquant de la semaine\u00a0:\u00a0<\/strong>SMA Europe et EURORDIS ont rencontr\u00e9 au d\u00e9but du mois Stella Kyriakides, commissaire europ\u00e9enne,<\/u><\/a><\/em> pour discuter d\u2019un acc\u00e8s \u00e9quitable au d\u00e9pistage n\u00e9onatal en Europe.\u00a0<\/p><\/td><\/tr>

\u00a0<\/td>

\u00a0<\/em><\/p>

Anja Helm<\/em><\/strong>
<\/em>Senior Manager of Relations with Patient Organisations<\/em><\/p><\/td><\/tr><\/tbody><\/table><\/td><\/tr><\/tbody><\/table><\/td><\/tr><\/tbody><\/table>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

\u00a0 La Newsletter des membres EURORDIS Les actus r\u00e9serv\u00e9es aux membres d\u2019EURORDIS,directement dans votre messagerie deux fois par mois Chers Membres, Aujourd\u2019hui m\u00eame, les d\u00e9cideurs politiques et dirigeants de l\u2019UE se r\u00e9unissent \u00e0 Bilbao, en Espagne, pour la Conf\u00e9rence sur les maladies rares et les r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence qui se tient dans le cadre […]<\/p>\n","protected":false},"author":10,"featured_media":3332,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-3330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classe","post-with-thumbnail","post-with-thumbnail-large"],"yoast_head":"\nOctobre 2023 Lettre Eurordis - Association Francophone Contre La Polychondrite Chronique Atrophiante<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/afpca.fr\/site\/octobre-2023-lettre-eurordis\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Octobre 2023 Lettre Eurordis - 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