{"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\/zh_tw\/care-and-family\/therapies2\/","title":{"rendered":"Therapies2"},"content":{"rendered":"<h1>\n\t\t\u7642\u6cd5\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>\u6f14\u8b1b<\/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\t\u589e\u52a0 DEE \u4e2d\u81e8\u5e8a\u8a66\u9a57\u548c\u65b0\u7642\u6cd5\u7684\u53ef\u53ca\u6027\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\/\">\u9577\u677f\u88fd\u85e5\u516c\u53f8<\/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\/\">\u7f55\u898b\u7672\u7647\u7db2\u7d61<\/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\t\u7ba1\u7406\u8907\u96dc\u5b69\u5b50\u7684\u65c5\u7a0b\n\t\t\t\t<p>\u5728\u9019\u6b21\u5c0d\u8a71\u4e2d\uff0c\u60a8\u5c07\u9047\u5230 Blyth Lord\u2014\u2014\u5361\u6885\u502b\u7684\u6bcd\u89aa\uff0c\u5979\u60a3\u6709\u907a\u50b3\u6027\u75be\u75c5\u4e26\u5728 2 \u6b72\u6642\u53bb\u4e16\u3002 <a href=\"https:\/\/courageousparentsnetwork.org\/\">\u52c7\u6562\u7684\u7236\u6bcd\u7db2\u7d61<\/a> \u4ee5\u53ca\u4ee4\u4eba\u96e3\u4ee5\u7f6e\u4fe1\u7684\u65b0\u8cc7\u6e90 \u2013 <a href=\"https:\/\/neurojourney.courageousparentsnetwork.org\/\">\u795e\u7d93\u4e4b\u65c5<\/a>\uff0c\u5b83\u6307\u5c0e\u60a3\u6709\u56b4\u91cd\u795e\u7d93\u640d\u50b7 (SNI) \u7684\u5152\u7ae5\u7684\u5bb6\u5ead\u7d93\u6b77\u6211\u5011\u5728\u7167\u9867\u5b69\u5b50\u6642\u5fc5\u9808\u9762\u5c0d\u7684\u8a31\u591a\u968e\u6bb5\u3002 NeuroJourney \u662f\u4e00\u6b3e\u7531\u7167\u8b77\u8005\u548c\u5c08\u696d\u4eba\u58eb\u5171\u540c\u5efa\u69cb\u7684\u7d9c\u5408\u5de5\u5177\uff0c\u53ef\u5e6b\u52a9\u5bb6\u5ead\u61c9\u5c0d\u5b69\u5b50\u4e0d\u65b7\u8b8a\u5316\u7684\u9700\u6c42\u4ee5\u53ca\u6211\u5011\u53ef\u80fd\u5fc5\u9808\u9762\u5c0d\u7684\u8907\u96dc\u6c7a\u5b9a\u3002<\/p>\n<p>\u9019\u662f DEE-P Connections \u806f\u5408\u5275\u59cb\u4eba Blyth\u3001DEE \u5abd\u5abd Gabi Conecker \u548c Chrissy Salley\uff08\u8207\u52c7\u6562\u7236\u6bcd\u7db2\u7d61\u548c NeuroJourney \u5408\u4f5c\u7684\u5152\u79d1\u5fc3\u7406\u5b78\u5bb6\uff09\u4e4b\u9593\u7684\u5c0d\u8a71\u3002<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P\uff1aNeuroJourney \u7c21\u4ecb\" 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>\u8981\u4e86\u89e3\u6709\u95dc DEE \u5bb6\u5ead\u7684\u91ab\u7642\u3001\u8b77\u7406\u548c\u652f\u6301\u6216\u7814\u7a76\u4e3b\u984c\u7684\u66f4\u591a\u4fe1\u606f\uff0c\u8acb\u8a2a\u554f\u6211\u5011\u7684 <a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/a>.<\/p>\n\t\t\t\t\u5927\u8166\u6350\u8d08\uff1a\u9700\u8981\u8003\u616e\u4ec0\u9ebc\u3001\u5982\u4f55\u904b\u4f5c\u3001\u5982\u4f55\u63d0\u4f9b\u5e6b\u52a9\n\t\t\t\t<p>\u5728\u8207\u7f55\u898b\u7684\u7672\u7647\u5abd\u5abd\u5011\u7684\u91cd\u8981\u8a0e\u8ad6\u4e2d\uff0c\u5979\u5011\u6c7a\u5b9a\u5728\u5b69\u5b50\u53bb\u4e16\u5f8c\u6350\u737b\u5b69\u5b50\u7684\u8166\u7d44\u7e54\uff0c\u6211\u5011\u8a0e\u8ad6\u4e86\u95dc\u65bc\u9019\u500b\u975e\u5e38\u500b\u4eba\u5316\u548c\u56f0\u96e3\u7684\u6c7a\u5b9a\u7684\u4e00\u4e9b\u95dc\u9375\u8981\u7d20\uff0c\u5305\u62ec\uff1a <\/p>\n<p>1. \u4ed6\u5011\u5982\u4f55\u4ee5\u53ca\u70ba\u4f55\u505a\u51fa\u6350\u8d08\u6c7a\u5b9a <br \/>2.\u5982\u4f55\u7ba1\u7406\u4e0d\u7406\u89e3\u6216\u4e0d\u540c\u610f\u7684\u5bb6\u4eba <br \/>3. \u6350\u8d08\u7269\u6d41 <br \/>4. \u6350\u8d08\u5982\u4f55\u5f71\u97ff\u751f\u547d\u7684\u846c\u79ae\/\u6176\u795d\u6d3b\u52d5 <br \/>\u548c\u66f4\u591a<\/p>\n<p>\u6211\u5011\u7684\u5609\u8cd3\u662f\u96ea\u840a\u00b7\u5967\u723e\u5fb7\u59c6\u3001\u5b89\u5409\u00b7\u97cb\u5f17\u548c\u6f58\u59ae\u00b7\u970d\u83ef\u5fb7\u3002<\/p>\n<p>\u9019\u500b\u7db2\u8def\u7814\u8a0e\u6703\u662f\u8207\u4ee5\u4e0b\u6a5f\u69cb\u5408\u4f5c\u8209\u8fa6\u7684\uff1a <a href=\"https:\/\/www.scn2a.org\/\">FamilieSCN2A\u57fa\u91d1\u6703<\/a> \u548c <a href=\"https:\/\/hope4harper.com\/\">\u5e0c\u671b\u54c8\u73c0<\/a>.<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"\u5927\u8166\u6350\u8d08\uff1a\u9700\u8981\u8003\u616e\u4ec0\u9ebc\u3001\u5982\u4f55\u904b\u4f5c\u3001\u5982\u4f55\u63d0\u4f9b\u5e6b\u52a9\" 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>\u60a8\u9084\u53ef\u4ee5\u4e86\u89e3\u66f4\u591a\u95dc\u65bc\u5927\u8166\u6350\u8d08\u5982\u4f55\u5728\u63a8\u52d5\u79d1\u5b78\u7814\u7a76\/\u7a81\u7834\u548c\u7406\u89e3\u795e\u7d93\u7cfb\u7d71\u75be\u75c5\u65b9\u9762\u767c\u63ee\u95dc\u9375\u4f5c\u7528\u3002 <a href=\"https:\/\/deepconnections.net\/2022\/06\/27\/why-brain-tissue-donation-matters\/\">\u4e4b\u524d\u7684\u7db2\u8def\u7814\u8a0e\u6703<\/a> \u8207\u5bb6\u4eba\u548c\u5c08\u696d\u4eba\u58eb\u3002<\/p>\n<p>\u5728\u6211\u5011\u7684\u7db2\u7ad9\u4e2d\u5c0b\u627e\u66f4\u591a\u5176\u4ed6\u8cc7\u6e90 <a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/a><\/p>\n<p>\u5982\u9700\u66f4\u591a DEE \u8cc7\u6e90\uff0c\u8acb\u67e5\u770b\u6211\u5011\u7684&nbsp;<a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/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\t\u76ae\u8cea\u8996\u89ba\u969c\u7919 (CVI) \u4ee5\u53ca\u767c\u80b2\u6027\u548c\u7672\u7647\u6027\u8166\u75c5\u8b8a (DEE)\n\t\t\t\t<p>\u5728\u672c\u6b21\u7db2\u8def\u7814\u8a0e\u6703\u4e2d\uff0c\u60a8\u5c07\u8a73\u7d30\u4e86\u89e3\u4ec0\u9ebc\u662f\u76ae\u8cea\u8996\u89ba\u969c\u7919 (CVI)\u3001\u60a3\u6709 CVI \u7684\u4eba\u6703\u662f\u4ec0\u9ebc\u6a23\u5b50\uff0c\u4ee5\u53ca\u5982\u4f55\u7ba1\u7406\u8b77\u7406\u4e26\u9069\u61c9\u60a3\u6709 CVI \u7684\u89aa\u4eba\u3002\u4f86\u81ea\u7f55\u898b\u7672\u7647\u60a3\u8005\u7684\u8996\u969c\u4eba\u58eb\u7684\u8b77\u7406\u4eba\u54e1\u548c\u8001\u5e2b\u3002 <\/p>\n<p>\u60a8\u5c07\u4e86\u89e3 CVI \u662f\u4ec0\u9ebc\u3001\u5b83\u5c0d\u60a8\u7684\u5b69\u5b50\u610f\u5473\u8457\u4ec0\u9ebc\u3001\u5982\u4f55\u7372\u5f97\u6b63\u78ba\u7684\u6cbb\u7642\u4ee5\u53ca\u5982\u4f55\u9069\u61c9\u60a8\u7684\u5bb6\u5ead\/\u751f\u6d3b\u3002 <\/p>\n<p>\u6211\u5011\u7684\u4f86\u8cd3\u662f\u60a3\u6709\u7f55\u898b\u7672\u7647\/DEE \u7684\u5abd\u5abd Stephanie Kung \u548c\u8c9d\u57fa\u00b7\u970d\u9ed8 (Becky Hommer)\uff0c\u5979\u662f\u99ac\u88e1\u862d\u5dde\u300c\u8d85\u8d8a\u8996\u807d\u300d\u7d44\u7e54\u7684\u8996\u969c\u4eba\u58eb\u6559\u5e2b\u3002<\/p>\n<figure>\n<iframe loading=\"lazy\" title=\"DEE-P\uff1a\u7f55\u898b\u7672\u7647 (DEE) \u4e2d\u7684\u76ae\u8cea\u8996\u89ba\u969c\u7919\" 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>\u8981\u4e86\u89e3\u6709\u95dc DEE \u5bb6\u5ead\u7684\u91ab\u7642\u3001\u8b77\u7406\u548c\u652f\u6301\u6216\u7814\u7a76\u4e3b\u984c\u7684\u66f4\u591a\u4fe1\u606f\uff0c\u8acb\u8a2a\u554f\u6211\u5011\u7684 <a href=\"https:\/\/deepconnections.net\/resource-center-main\/\">\u8cc7\u6e90\u4e2d\u5fc3<\/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 v28.6) - 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