{"id":5932,"date":"2024-07-15T02:00:55","date_gmt":"2024-07-15T09:00:55","guid":{"rendered":"https:\/\/deepconnections.net\/?page_id=5932"},"modified":"2024-07-17T10:29:16","modified_gmt":"2024-07-17T17:29:16","slug":"therapies2","status":"publish","type":"page","link":"https:\/\/deepconnections.net\/ro_ro\/care-and-family\/therapies2\/","title":{"rendered":"Therapies2"},"content":{"rendered":"<h1>\n\t\tTerapii\n\t<\/h1>\n<h3>\n\t\tInformation on therapies for those with DEEs\n\t<\/h3>\n\t\t\t\t\t\t\t\t<a href=\"http:\/\/accordion-therapies-webinars\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t<\/a>\n\t<h3><a href=\"http:\/\/accordion-therapies-webinars\" target=\"_self\" rel=\"noopener\">WEBINARS AND VIDEOS<\/a><\/h3><p>Don&#8217;t miss these informative webinars and videos that address important issues.<\/p>\n\t<h3>Prezent\u0103ri<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t<h3>Tools &#038; Resources<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t<h3>Adaptive Equipment<\/h3><p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis.<\/p>\n\t\t\t\tTraveling with Your Medically Complex Child\n\t\t\t\t<p>This webinar is packed with great information, strategies, and tactics for traveling with a medically complex child.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P:  Traveling with your medically complex child\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/NBOiMjQ9NR0?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n\t\t\t\tCre\u0219terea accesului la studiile clinice \u0219i la noi tratamente \u00een DEE\n\t\t\t\t<p>This is a recording of the webinar held on April 29, 2024.<\/p>\n<p>This is a conversation about a promising clinical trial model for new epilepsy treatments that accelerates access to the wider community of DEEs. A &#8220;basket trial&#8221; design is used in clinical trials for medicines aiming to treat symptoms of those living with DEEs, including seizures. This broad approach is different than the current standard clinical trial design singling out individual disorders, and would mean increased access to clinical research for a wider range of families interested in participating. With this more inclusive model, treatments approved using this method could include DEEs in the &#8220;label&#8221; (i.e. approved by the FDA for use), reducing the need for families to have to fight with doctors and insurance companies for the use of drugs off-label. <\/p>\n<p>Joining us for this discussion about this new model in clinical trials for epilepsy treatments was Randall Kaye, Chief Medical Officer at <a href=\"https:\/\/www.longboardpharma.com\/\">Longboard Pharmaceuticals<\/a> who has applied this model in their innovative Phase I\/II PACIFIC trial design, which was inclusive of all DEEs.<\/p>\n<p>This webinar was also held in partnership with the <a href=\"https:\/\/www.rareepilepsynetwork.org\/\">Re\u021beaua de epilepsie rar\u0103<\/a>, represented by Christina SanInocencio, the current REN Chair.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Increasing Access to Clinical Trials and New Treatments Across the DEEs\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/lMy9dvO1N8Q?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>DEE-P Connections is actively advocating with the FDA to be more supportive of pharmaceutical companies in utilizing this basket trial model and we welcome more families to help speak out about the need to accelerate improved treatments for the dozens of rare epilepsies. Reach out if you want to get involved &#8211; info@deepconnections.site<\/p>\n\t\t\t\tGestionarea c\u0103l\u0103toriei cu copilul dumneavoastr\u0103 complex\n\t\t\t\t<p>\u00cen aceast\u0103 conversa\u021bie, \u00eel ve\u021bi \u00eent\u00e2lni pe Blyth Lord - mama lui Cameron care a avut o tulburare genetic\u0103 \u0219i a murit la v\u00e2rsta de 2 ani. Ea este fondatorul <a href=\"https:\/\/courageousparentsnetwork.org\/\">Re\u021beaua de p\u0103rin\u021bi curajo\u0219i<\/a> precum \u0219i o nou\u0103 resurs\u0103 incredibil\u0103 - <a href=\"https:\/\/neurojourney.courageousparentsnetwork.org\/\">NeuroJourney<\/a>, care ghideaz\u0103 familiile copiilor cu deficien\u021be neurologice severe (SNI) prin numeroasele etape cu care trebuie s\u0103 ne confrunt\u0103m atunci c\u00e2nd ne \u00eengrijim copiii. NeuroJourney este un instrument cuprinz\u0103tor, construit at\u00e2t cu \u00eengrijitorii, c\u00e2t \u0219i cu profesioni\u0219ti, pentru a ajuta familiile s\u0103 navigheze \u00een nevoile \u00een evolu\u021bie ale copilului nostru, precum \u0219i \u00een deciziile complexe cu care ar trebui s\u0103 ne confrunt\u0103m.<\/p>\n<p>Aceasta este o conversa\u021bie \u00eentre Blyth, co-fondatorul DEE-P Connections \u0219i mama DEE, Gabi Conecker \u0219i Chrissy Salley \u2013 un psiholog pediatru care lucreaz\u0103 cu Courageous Parents Network \u0219i NeuroJourney.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Introducere \u00een NeuroJourney\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/jhP_s2slCOE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>Pentru a afla mai multe despre teme medicale, de \u00eengrijire \u0219i de sprijin sau de cercetare pentru familiile DEE, vizita\u021bi-ne <a href=\"https:\/\/deepconnections.net\/ro_ro\/resource-center-main\/\">Centru de resurse<\/a>.<\/p>\n\t\t\t\tDonarea creierului: ce trebuie luat \u00een considerare, cum func\u021bioneaz\u0103 \u0219i cum poate ajuta\n\t\t\t\t<p>\u00cen aceast\u0103 discu\u021bie important\u0103 cu mame rare cu epilepsie, care au luat decizia de a dona \u021besutul cerebral al copiilor lor la moarte, discut\u0103m o serie de elemente critice despre aceast\u0103 decizie profund personal\u0103 \u0219i dificil\u0103, inclusiv: <\/p>\n<p>1. Cum \u0219i de ce au luat decizia de a dona <br \/>2. Cum s\u0103 gestionezi membrii familiei care nu \u00een\u021beleg sau nu sunt de acord <br \/>3. Logistica dona\u021biei <br \/>4. Cum afecteaz\u0103 dona\u021bia funeraliile\/s\u0103rb\u0103torirea vie\u021bii <br \/>\u0218i altele<\/p>\n<p>Oaspe\u021bii no\u0219tri sunt Shelley Oldham, Angie Weaver \u0219i Penny Howard.<\/p>\n<p>Acest webinar este g\u0103zduit \u00een parteneriat cu <a href=\"https:\/\/www.scn2a.org\/\">Funda\u021bia FamilieSCN2A<\/a> \u0219i <a href=\"https:\/\/hope4harper.com\/\">Hope4Harper<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"Donarea creierului: ce trebuie luat \u00een considerare, cum func\u021bioneaz\u0103 \u0219i cum poate ajuta\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/rMqlgtS8yXE?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>De asemenea, pute\u021bi afla mai multe despre modul \u00een care donarea de creier joac\u0103 un rol crucial \u00een promovarea cercet\u0103rii \u0219tiin\u021bifice\/descoperiri \u0219i \u00een\u021belegerea condi\u021biilor neurologice \u00een acest domeniu. <a href=\"https:\/\/deepconnections.net\/ro_ro\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">webinarul anterior<\/a> cu familii \u0219i profesioni\u0219ti.<\/p>\n<p>G\u0103si\u021bi mai multe resurse suplimentare \u00een site-ul nostru <a href=\"https:\/\/deepconnections.net\/ro_ro\/resource-center-main\/\">Centru de resurse<\/a><\/p>\n<p>Pentru mai multe resurse DEE, consulta\u021bi&nbsp;<a href=\"https:\/\/deepconnections.net\/ro_ro\/resource-center-main\/\">centru de resurse<\/a><\/p>\n<figure><img loading=\"lazy\" decoding=\"async\" width=\"944\" height=\"256\" src=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png\" alt=\"\" srcset=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png 944w, https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM-300x81.png 300w\" sizes=\"auto, (max-width: 944px) 100vw, 944px\" \/><\/figure>\n\t\t\t\tDeficien\u021ba vizual\u0103 cortical\u0103 (CVI) \u0219i encefalopatiile de dezvoltare \u0219i epileptice (DEE)\n\t\t\t\t<p>\u00cen acest webinar, ve\u021bi afla mai multe despre ce este Deficien\u021ba vizual\u0103 cortical\u0103 (CVI), cum arat\u0103 lucrurile pentru cineva cu CVI \u0219i cum s\u0103 gestiona\u021bi \u00eengrijirea \u0219i s\u0103 v\u0103 adapta\u021bi pentru persoana iubit\u0103 cu CVI. at\u00e2t din partea \u00eengrijitorilor c\u00e2t \u0219i a unui profesor al deficien\u021bilor de vedere \u00een epilepsiile rare. <\/p>\n<p>Ve\u021bi auzi ce este CVI, ce \u00eenseamn\u0103 pentru copilul dumneavoastr\u0103, cum s\u0103 ob\u021bine\u021bi tipul potrivit de terapie \u0219i s\u0103 v\u0103 adapta\u021bi casa\/via\u021ba. <\/p>\n<p>Oaspe\u021bii no\u0219tri sunt Stephanie Kung \u0219i Becky Hommer, mam\u0103 rara cu epilepsie\/DEE, profesor pentru persoanele cu deficien\u021be de vedere la Connections Beyond Sight and Sound din Maryland.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P: Deficien\u021b\u0103 vizual\u0103 cortical\u0103 \u00een epilepsiile rare (DEE)\" width=\"500\" height=\"375\" src=\"https:\/\/www.youtube.com\/embed\/h4QLGNrwrCM?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/figure>\n<p>Pentru a afla mai multe despre teme medicale, de \u00eengrijire \u0219i de sprijin sau de cercetare pentru familiile DEE, vizita\u021bi-ne <a href=\"https:\/\/deepconnections.net\/ro_ro\/resource-center-main\/\">Centru de resurse<\/a>.<\/p>\n<h2>\n\t\tRecent Projects\n\t<\/h2>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/2922127733_dc8576e308_b-landscape.jpg\" alt=\"2922127733_dc8576e308_b\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"2922127733_dc8576e308_b\" onerror=\"this.style.display='none'\"  \/>\n<h4>Lorem Ipsum<\/h4>\t\n\t\t\t\t<a href=\"#\" target=\"_self\" itemprop=\"url\" rel=\"noopener\">\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/2984808217_87edbdfa79_b-landscape.jpg\" alt=\"2984808217_87edbdfa79_b\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"2984808217_87edbdfa79_b\" onerror=\"this.style.display='none'\"  \/>\n\t\t\t\t<\/a>\n<h4><a href=\"#\" target=\"_self\" rel=\"noopener\">Prima Tuba Aurea<\/a><\/h4>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/lights-1024x768-landscape.jpg\" alt=\"lights\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"lights\" onerror=\"this.style.display='none'\"  \/>\n<h4>Ambitae Praebebat<\/h4>\t\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/bb-plugin\/cache\/iStock_000012026571Medium-683x1024-landscape.jpg\" alt=\"Painted textured studio backdrop in shades of blue and green. Ideal for creating backdrops for dramatic studio portaits\" itemprop=\"image\" height=\"150\" width=\"150\" title=\"Blue and green textured studio backdrop\" onerror=\"this.style.display='none'\"  \/>\n<h4>Lorem Ipsum<\/h4>\t\n<h2>\n\t\tClient Love\n\t<\/h2>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/2014\/02\/generic-white-dude-150x150.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n\t<h4>David Quest<\/h4>\n<p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis! Silvas campoque terras coeptis homo rudis fronde.<\/p>\n\t\t\t\t<img decoding=\"async\" src=\"https:\/\/demos.wpbeaverbuilder.com\/wp-content\/uploads\/sites\/4\/2014\/02\/gal-150x150.png\" alt=\"\" itemprop=\"image\" onerror=\"this.style.display='none'\"  \/>\n\t<h4>Jennifer Barrett<\/h4>\n<p>Deus forma auroram sine volucres mixta frigore. Formas persidaque praebebat pendebat. Caesa consistere vis fratrum suis locis! Silvas campoque terras coeptis homo rudis fronde.<\/p>\n\t\t<h3>Questions about getting started? Drop us a line to find out more!<\/h3>\n\t\t<p>Effervescere quicquam tepescunt tegi agitabilis mentes mutatas.<\/p>\n\t\t\t<a href=\"\" target=\"_self\" rel=\"noopener\">\n\t\t\t\t\t\t\tGet In Touch\n\t\t\t\t\t<\/a>","protected":false},"excerpt":{"rendered":"<p>Therapies Information on therapies for those with DEEs WEBINARS AND VIDEOS Don&#8217;t miss these informative webinars and videos that address important issues. Presentations Deus forma auroram sine volucres mixta frigore.&hellip;<\/p>","protected":false},"author":8,"featured_media":0,"parent":2267,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"class_list":["post-5932","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Therapies2 - DEE-P Information Resource Center<\/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:\/\/deepconnections.net\/ro_ro\/care-and-family\/therapies2\/\" \/>\n<meta property=\"og:locale\" content=\"ro_RO\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Therapies2\" \/>\n<meta property=\"og:description\" content=\"Therapies Information on therapies for those with DEEs WEBINARS AND VIDEOSDon&#039;t miss these informative webinars and videos that address important issues.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/deepconnections.net\/ro_ro\/care-and-family\/therapies2\/\" \/>\n<meta property=\"og:site_name\" content=\"DEE-P Information Resource Center\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/DEEPConnectionsEpilepsy\" \/>\n<meta property=\"article:modified_time\" content=\"2024-07-17T17:29:16+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/deepconnections.net\/wp-content\/uploads\/2024\/03\/Screen-Shot-2024-03-08-at-7.55.04-AM.png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Timp estimat pentru citire\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minute\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/deepconnections.net\\\/care-and-family\\\/therapies2\\\/\",\"url\":\"https:\\\/\\\/deepconnections.net\\\/care-and-family\\\/therapies2\\\/\",\"name\":\"Therapies2 - 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