{"id":17431,"date":"2025-07-20T17:03:32","date_gmt":"2025-07-20T15:03:32","guid":{"rendered":"https:\/\/www.cutislaxa.org\/?p=17431"},"modified":"2025-09-02T17:11:25","modified_gmt":"2025-09-02T15:11:25","slug":"grossesse-et-planning-familial-dans-les-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.cutislaxa.org\/fr\/grossesse-et-planning-familial-dans-les-maladies-rares\/","title":{"rendered":"Grossesse et Planning Familial dans les Maladies rares"},"content":{"rendered":"<p style=\"text-align: center;\"><strong>Le Journal Orphanet Journal des Maladies Rares a publi\u00e9 les r\u00e9sulatst de l&rsquo;enqu\u00eate aupr\u00e8s des professionnels de sant\u00e9 \u00ab\u00a0Grossesse et Planning Familial dans les Maladies Rares\u00a0\u00bb<\/strong><\/p>\n<p style=\"text-align: center;\">(<a href=\"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-024-03435-z\">lire la publication<\/a>)<\/p>\n<p>Le groupe de travail transversal des r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERNs) r\u00e9unissant des repr\u00e9sentants de malades (EPAGs) (dont Marie-Claude Boiteux) et des professionnels de sant\u00e9 (HCP) issus de 20 ERNs est l&rsquo;auteur de cette publication. Apr\u00e8s avoir identifi\u00e9 les 7 domaines transversaux qui devaient \u00eatre explor\u00e9s dans cette enqu\u00eate (pr\u00e9servation de la fertilit\u00e9, conseil pr\u00e9conception, conseil de Planning Familial, diagnostic pr\u00e9-implantatoire, diagnostic pr\u00e9natal, suivi de la grossesse, suivi post-accouchement\/lactation\/conseils\/nouveau-n\u00e9), le groupe a \u00e9tabli des questions ferm\u00e9es et ouvertes pour chacun de ces domaines. Ces questions ont explor\u00e9 le niveau d\u2019importance du domaine, les activit\u00e9s men\u00e9es par le centre de r\u00e9f\u00e9rence, les d\u00e9fis cliniques, les bonnes pratiques et les activit\u00e9s \u00e9ducatives.<\/p>\n<p>197 HCP, de 24 pays diff\u00e9rents ont r\u00e9pondu.<\/p>\n<p>Le \u00ab\u00a0Conseil pr\u00e9conception\u00a0\u00bb et le \u00ab\u00a0Suivi de la Grossesse\u00a0\u00bb ont \u00e9t\u00e9 consid\u00e9r\u00e9s comme tr\u00e8s important\/important \u00e0 83,3 % et 75,6 % respectivement. Quant au \u00ab\u00a0Conseil de Planning Familial\u00a0\u00bb il est consid\u00e9r\u00e9 comme tr\u00e8s important\/ important \u00e0 71,6%.<\/p>\n<p>Les conclusions de cette enqu\u00eate pointent des besoins non-satisfaits pour les HCPs, incluant\u00a0: le besoin d\u2019am\u00e9liorer la communication entre les divers HCPs, le manque de parcours organisationnels pr\u00e9d\u00e9finis, le manque de disponibilit\u00e9 d\u2019experts pour certains probl\u00e8mes li\u00e9s \u00e0 la grossesse et la n\u00e9cessit\u00e9 d\u2019harmoniser les suivis parmi les divers pays europ\u00e9ens.<\/p>\n<p>De plus, l\u2019enqu\u00eate souligne le besoin d\u2019am\u00e9liorer les activit\u00e9s \u00e9ducatives propos\u00e9es aux malades atteints de maladies rares.<\/p>\n<p>D\u2019une fa\u00e7on g\u00e9n\u00e9rale, les r\u00e9sultats pointent le besoin d\u2019\u00e9duquer aussi bien les m\u00e9decins que les malades sur la base des<\/p>\n<p>besoins non-satisfaits qui ont \u00e9merg\u00e9. Les ressources en ligne peuvent \u00eatre un bon outil \u00e9ducatif, elles peuvent aider \u00e0 diss\u00e9miner et \u00e0 standardiser les activit\u00e9s \u00e9ducatives pour homog\u00e9n\u00e9iser l\u2019information donn\u00e9e aux HCPs et aux malades.<\/p>\n<p>C\u2019est pourquoi des initiatives dans cette direction par les soci\u00e9t\u00e9s scientifiques, les ERNs et les associations de malades devraient \u00eatre promues et encourag\u00e9es.<\/p>\n<p>&nbsp;<\/p>\n<p>Un deuxi\u00e8me questionnaire a \u00e9t\u00e9 diffus\u00e9 aupr\u00e8s des malades. Les r\u00e9ponses sont en cours d\u2019analyse et devraient donner lieu \u00e0 une prochaine publication. Il sera alors possible de comparer l\u2019avis des HCPs avec celui des malades.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Le Journal Orphanet Journal des Maladies Rares a publi\u00e9 les r\u00e9sulatst de l&rsquo;enqu\u00eate aupr\u00e8s des professionnels de sant\u00e9 \u00ab\u00a0Grossesse et Planning Familial dans les Maladies Rares\u00a0\u00bb (lire la publication) Le groupe de travail transversal des r\u00e9seaux europ\u00e9ens de r\u00e9f\u00e9rence (ERNs) r\u00e9unissant des repr\u00e9sentants de malades (EPAGs) (dont Marie-Claude Boiteux) et des professionnels de sant\u00e9 (HCP) [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":17424,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[61,60,66],"tags":[],"class_list":["post-17431","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-quoi-de-neuf","category-recherche","category-recherche-medecine-genetique"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.0 - 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