{"id":3342,"date":"2021-08-12T16:53:22","date_gmt":"2021-08-12T23:53:22","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=3342"},"modified":"2026-02-02T16:20:02","modified_gmt":"2026-02-02T21:20:02","slug":"partner-with-us","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/fr_ca\/partner-with-us\/","title":{"rendered":"Devenez partenaire avec nous"},"content":{"rendered":"<p>DEE-P Connections s&#039;efforce d&#039;am\u00e9liorer le soutien aux familles d&#039;enfants atteints d&#039;enc\u00e9phalopathies d\u00e9veloppementales et \u00e9pileptiques (DEE) graves.<\/p>\n<p><strong>Nous travaillons \u00e0 :<\/strong><\/p>\n<ul>\n<li>Proposer des webinaires p\u00e9riodiques sur des questions sp\u00e9cifiquement pertinentes aux DEE graves<\/li>\n<li>Fournir un centre de ressources en ligne consolid\u00e9 pour inclure des webinaires enregistr\u00e9s et les meilleurs documents disponibles sur les questions li\u00e9es aux DEE graves<\/li>\n<\/ul>\n<h3><strong>Engagement du DEE-P envers les partenariats collaboratifs<\/strong><\/h3>\n<p>Le projet DEE est con\u00e7u pour fournir des informations et des ressources \u00e0 une communaut\u00e9 plus large de familles confront\u00e9es \u00e0 des DEE graves en tirant parti et en compl\u00e9tant les initiatives des organisations existantes sur l&#039;\u00e9pilepsie rare. L&#039;effort sera structur\u00e9, g\u00e9r\u00e9 et organis\u00e9 pour renforcer et \u00e9tendre le soutien que les organisations existantes sont en mesure d&#039;apporter \u00e0 leurs communaut\u00e9s. Huit groupes de d\u00e9fense des patients sont les partenaires fondateurs, travaillant ensemble pour b\u00e2tir cette initiative, partageant ressources, expertise et exp\u00e9riences. Veuillez nous rejoindre en tant que collaboratif.<\/p>\n<h3><strong><\/strong><strong>Avantages pour les groupes de maladies rares existants<\/strong><\/h3>\n<figure><img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/08\/Jake1.jpg\" alt=\"\" width=\"250\" height=\"250\" \/><\/figure>\n<p>This approach seeks to reduce this populations&#8217; isolation by providing a comprehensive and accessible online resource for families across the rare epilepsies who experience many similar challenges. This resource should serve <em>les deux <\/em>de rares organisations sp\u00e9cialis\u00e9es dans l&#039;\u00e9pilepsie qui fournissent d\u00e9j\u00e0 des informations tr\u00e8s utiles \u00e0 ces familles, mais sous une forme plus consolid\u00e9e, ainsi que des organisations plus r\u00e9centes ayant une capacit\u00e9 plus limit\u00e9e \u00e0 fournir des ressources diverses. Les populations re\u00e7oivent des informations plus nombreuses et de meilleure qualit\u00e9, les ressources existantes sont plus largement diffus\u00e9es et la n\u00e9cessit\u00e9 de d\u00e9ployer de nombreux efforts similaires, redondants et co\u00fbteux, est r\u00e9duite.<\/p>\n<p>M\u00eame s\u2019il ne s\u2019agit pas de l\u2019objectif initial de cet effort, cet effort de collaboration peut s\u2019av\u00e9rer prometteur en termes d\u2019efficacit\u00e9 et de nouvelles orientations en recherche. La recherche transversale sur les ph\u00e9notypes graves, quelles que soient les \u00e9tiologies, pourrait pr\u00e9senter une voie inexplor\u00e9e pour le d\u00e9veloppement potentiel de traitements et de strat\u00e9gies visant \u00e0 am\u00e9liorer la qualit\u00e9 de vie des enfants les plus gravement touch\u00e9s dans une gamme d&#039;\u00e9pilepsies rares.<\/p>\n<h3><strong><\/strong><strong><\/strong><strong>Comment les organisations partenaires peuvent soutenir cette initiative<\/strong><\/h3>\n<ul>\n<li>Annoncez la ressource DEE-P Connections \u00e0 votre communaut\u00e9 et partagez les notifications des webinaires \u00e0 venir<\/li>\n<li>Share and help identify existing materials your organization has developed for inclusion in the resource center (they will be properly attributed to your organization and linked back to your website or wherever they &#8220;live&#8221;)<\/li>\n<li>Partager le temps entre le personnel et les experts membres pour planifier\/co-diriger un webinaire<\/li>\n<\/ul>\n<figure><img decoding=\"async\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2021\/08\/DEE-Plaunchcropped.png\" alt=\"\" width=\"563\" height=\"422\" \/><\/figure>\n<h1><strong><\/strong><strong><\/strong><strong>Partenaires actuels<\/strong><\/h1>\n<p><strong><a href=\"https:\/\/deepconnections.net\/fr_ca\/contact\/\" target=\"_blank\" rel=\"noreferrer noopener\">Si vous souhaitez devenir partenaire DEE-P, n&#039;h\u00e9sitez pas \u00e0 nous contacter\u00a0!<\/a><\/strong><\/p>\n\t<h2><strong>Nous avons \u00e9galement \u00e9tabli des partenariats strat\u00e9giques afin de fournir \u00e0 nos familles DEE une grande vari\u00e9t\u00e9 de ressources utiles\u00a0!<\/strong><\/h2>","protected":false},"excerpt":{"rendered":"<p>DEE-P Connections is working to enhance support for families of children with severe Developmental &amp; 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