{"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\/nb_no\/partner-with-us\/","title":{"rendered":"Partner med oss"},"content":{"rendered":"<p>DEE-P Connections jobber for \u00e5 forbedre st\u00f8tten til familier til barn med alvorlig utviklings- og epileptisk encefalopati (DEE)<\/p>\n<p><strong>Vi jobber for \u00e5:<\/strong><\/p>\n<ul>\n<li>Tilby periodiske webinarer om saker som er spesielt relevante for alvorlige DEE-er<\/li>\n<li>Gi et konsolidert nettbasert ressurssenter for \u00e5 inkludere innspilte webinarer og det beste tilgjengelige materialet om problemer som er relevante for alvorlige DEEs<\/li>\n<\/ul>\n<h3><strong>DEE-P forpliktelse til samarbeidspartnerskap<\/strong><\/h3>\n<p>DEE-prosjektet er designet for \u00e5 gi informasjon og ressurser til et bredere fellesskap av familier som h\u00e5ndterer alvorlige DEEs ved \u00e5 utnytte og supplere initiativer fra eksisterende sjeldne epilepsiorganisasjoner. Innsatsen vil bli strukturert, administrert og organisert for \u00e5 styrke og utvide st\u00f8tten som eksisterende organisasjoner er i stand til \u00e5 gi sine lokalsamfunn. \u00c5tte pasientgrupper er de grunnleggende partnerne, og jobber sammen for \u00e5 bygge dette initiativet, og deler ressurser, ekspertise og erfaringer. Bli med oss som et samarbeid.<\/p>\n<h3><strong><\/strong><strong>Fordeler for eksisterende sjeldne sykdommer<\/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>b\u00e5de <\/em>sjeldne epilepsiorganisasjoner som allerede gir sv\u00e6rt nyttig informasjon til disse familiene, men i en mer konsolidert form, samt nyere organisasjoner med mer begrenset kapasitet til \u00e5 tilby ulike ressurser. Befolkninger f\u00e5r mer og bedre informasjon, eksisterende ressurser spres bredere, og behovet for mange lignende duplikative og kostbare innsatser reduseres.<\/p>\n<p>Selv om det ikke er det f\u00f8rste fokuset for denne innsatsen, kan denne samarbeidsinnsatsen holde l\u00f8ftet om effektivitet og nye retninger innen forskning. Tverrg\u00e5ende forskning p\u00e5 alvorlige fenotyper p\u00e5 tvers av etiologier kan presentere en uutforsket vei til potensiell utvikling av behandlinger og strategier for \u00e5 forbedre livskvaliteten til de mest alvorlig rammede barna p\u00e5 tvers av en rekke sjeldne epilepsier.<\/p>\n<h3><strong><\/strong><strong><\/strong><strong>Hvordan partnerorganisasjoner kan st\u00f8tte dette initiativet<\/strong><\/h3>\n<ul>\n<li>Annonser DEE-P Connections-ressursen til fellesskapet ditt og del varsler om kommende webinarer<\/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>Del ansattes\/medlemseksperters tid til \u00e5 planlegge\/medlede et webinar<\/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>N\u00e5v\u00e6rende partnere<\/strong><\/h1>\n<p><strong><a href=\"https:\/\/deepconnections.net\/nb_no\/contact\/\" target=\"_blank\" rel=\"noreferrer noopener\">Hvis du er interessert i \u00e5 bli DEE-P-partner, vennligst ta kontakt!<\/a><\/strong><\/p>\n\t<h2><strong>Vi har ogs\u00e5 bygget strategiske partnerskap for \u00e5 gi v\u00e5re DEE-familier et bredt utvalg av nyttige ressurser!<\/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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