{"id":102344,"date":"2018-05-16T19:44:54","date_gmt":"2018-05-17T00:44:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/6-arlige-internasjonale-ecd-samling-for-pasienter-og-parorende-orlando-fl\/"},"modified":"2026-07-07T11:54:52","modified_gmt":"2026-07-07T16:54:52","slug":"6-arlige-internasjonale-ecd-samling-for-pasienter-og-parorende-orlando-fl","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/6-arlige-internasjonale-ecd-samling-for-pasienter-og-parorende-orlando-fl\/","title":{"rendered":"Den 6. \u00e5rlige ECD-samlingen for pasienter og p\u00e5r\u00f8rende i Orlando, FL"},"content":{"rendered":"

[et_pb_section fb_built=»1″ _builder_version=»4.27.6″ _module_preset=»default» custom_padding=»20px||0px||false|false» locked=»off» global_colors_info=»{}»][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»||10px||false|false» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_heading title=»@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@» _builder_version=»4.27.6″ _dynamic_attributes=»title» _module_preset=»default» custom_margin=»||0px||false|false» custom_padding=»||0px||false|false» global_colors_info=»{}»][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=»single-line-buttons » _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»0px||0px||false|false» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][et_pb_button button_text=»Julio Hajdenberg, lege» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»Orlando Health» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||900″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»Orlando, FL» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||divi||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»16. november 2018″ _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»0px||||false|false» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture16.png» title_text=»Orlando pasient- og familiesamling» align=»center» force_fullwidth=»on» module_class=»event-image» _builder_version=»4.27.6″ _module_preset=»default» border_radii=»on|10px|10px|10px|10px» global_colors_info=»{}»][\/et_pb_image][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» text_font_size=»14px» text_line_height=»-0.1em» text_orientation=»center» global_colors_info=»{}»]<\/p>\n

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Orlando internasjonale ECD Pasient- & Familiesamling Gruppebilde 2018<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=»1″ _builder_version=»4.27.5″ _module_preset=»default» custom_padding=»0px||||false|false» locked=»off» global_colors_info=»{}»][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»10px||||false|false» global_colors_info=»{}» width__hover_enabled=»off|desktop»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}»]<\/p>\n

Sammendrag fra pasient- og familiesamling<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]2018 Patient & Family Gathering (PFG) samlet 75 pasienter og familiemedlemmer fra 4 land. Pasient- og p\u00e5r\u00f8rendemilj\u00f8et fikk selskap av 44 klinikere og forskere som brenner for \u00e5 behandle pasienter og l\u00e6re mer om Erdheim-Chester sykdom. Fjorten klinikere\/forskere holdt foredrag om ECD og behov for st\u00f8tte knyttet til ECD. Det ble arrangert en festmiddag for alle deltakerne, noe som ga tid til fellesskap og anerkjennelse av ledere i milj\u00f8et som dedikerer sin tid og sine ressurser til \u00e5 hjelpe ECD-samfunnet. Se informasjonen nedenfor for mer om PFG-aktiviteter og presentasjoner, samt bilder fra konferansen.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»10px||20px||false|false» locked=»off» global_colors_info=»{}» width__hover_enabled=»off|desktop»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}»]<\/p>\n

Programmer med dagsorden for samlingen<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»1_3,1_3,1_3″ module_class=»single-line-buttons » _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» locked=»off» global_colors_info=»{}»][et_pb_column type=»1_3″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture13-1.png» title_text=»Picture1(3)» url=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Final-PFG-2018-booklet-V2.pdf» url_new_window=»on» _builder_version=»4.27.6″ _module_preset=»default» border_radii=»on|8px|8px|8px|8px» border_width_all=»1px» border_color_all=»#b2b2b2″ global_colors_info=»{}»][\/et_pb_image][\/et_pb_column][et_pb_column type=»1_3″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][\/et_pb_column][et_pb_column type=»1_3″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»0px||0px||false|false» locked=»off» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}»]<\/p>\n

Presentasjon<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»||0px||false|false» locked=»off» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_text module_class=»event-table» _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]<\/p>\n\n\n\n\n\t\n\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>Video<\/th>\n<\/tr>\n<\/thead>\n
Eric Jacobsen, MD, PhD<\/td>The Drug Trial Process<\/a><\/td>The Drug Trial Process - Eric Jacobsen<\/a><\/td>\n<\/tr>\n
Ronald S. Go, MD<\/td>Treatment Options for ECD<\/a><\/td>ECD Treatment Options - Ronald Go<\/a><\/td>\n<\/tr>\n
Cassie Nguyen, PharmD, BCOP<\/td>Drug Management<\/td>Drug Management for ECD Patients - Cassie Nguyen<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain<\/td>ECD Patient Registry - Eli Diamond<\/a><\/td>\n<\/tr>\n
Allison Mofsky, MA, CCC-SLP<\/td>Speech and Swallowing<\/td><\/td>\n<\/tr>\n
Fady Hannah-Shmouni, MD, DABIM FRCPC<\/td>Endocrine Dysfunction in ECD<\/a><\/td>Endocrine Dysfunction - Fady Hannah-Shmouni<\/a><\/td>\n<\/tr>\n
Patty Bobryk, MHS, PT, MSCS, ATP<\/td>ECD and Exercise<\/a><\/td><\/td>\n<\/tr>\n
Colleen Scordato, DPT, Cert. MDT<\/td>Physical Therapy<\/td>Physical Therapy - Colleen Scordato<\/a><\/td>\n<\/tr>\n
Rebecca Donnenberg<\/td>Nutrition for ECD Patients<\/td>Nutrition for ECD Patients - Rebecca Donnenberg<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD Registry Update<\/td><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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Fotografier<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»20px||20px||false|false» global_colors_info=»{}»]<\/p>\n

Bilder fra mottakelsen<\/h3>\n

F\u00f8lgende bilder ble tatt under ECD Patient & Family Gathering Reception med medisinsk fagpersonell og ECD familier den 15. november 2018 p\u00e5 Orlando Health Regional Medical Center. Takk til alle deltakerne for at de deltok og engasjerte seg i samfunnet. Du finner flere bilder p\u00e5 Facebook under taggen #ECDGA18 eller direkte p\u00e5 v\u00e5r ECDGA Facebook-side<\/a>. <\/p>\n

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Bilder fra pasientm\u00f8ter<\/h3>\n

F\u00f8lgende bilder ble tatt under ECD Patient & Family Gathering-m\u00f8tet den 16. november 2018 p\u00e5 Orlando Health – Orlando Regional Medical Center. Takk til alle deltakerne for at de deltok under m\u00f8tet og de sosiale stundene, noe som ga stor st\u00f8tte og gode forbindelser i dette samfunnet. Du kan finne flere bilder p\u00e5 Facebook under taggen #ECDGA18 eller direkte p\u00e5 v\u00e5r ECDGA Facebook-side<\/a>. Bli med oss igjen 12. juli 2019 i Milano, Italia! <\/p>\n

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Orlando internasjonale ECD Pasient- & Familiesamling Gruppebilde 2018 Sammendrag fra pasient- og familiesamling2018 Patient & Family Gathering (PFG) samlet 75 pasienter og familiemedlemmer fra 4 land. Pasient- og p\u00e5r\u00f8rendemilj\u00f8et fikk […]<\/p>\n","protected":false},"author":20,"featured_media":173037,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"\"<\/a>Location:<\/strong> Orlando, FL\r\n\r\nA total of 109 patients, family members, and physicians, from eight countries attended the 2018 Patient & Family Gathering.\r\n\r\nAttendees learned about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and more about care management. Please see the event materials below for more on this successful event. Thank you to all participants!\r\n\r\nPresentation Slides<\/strong>\r\nComing soon!\r\n\r\nReception Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on November 15, 2018 at the Orlando Health Regional Medical Center. Thank you to all participants for attending and engaging with the community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page<\/a>.\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"35536,35548,35560,35572,35584,35596,35608,35620,35632,35644,35656,35668,35680,35692,35704,35716,35728,35740,35752,35764,35776,35788,35800,35812,35824,35836,35848,35860,35872,35884,35896,35908,35920,35932,35944,35956,35968\"]\r\n\r\nPatient Meeting Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering meeting on November 16, 2018 the Orlando Health \u2013 Orlando Regional Medical Center. Thank you to all attendees for participating during the meeting and social times, allowing great support and connections within this community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our ECDGA Facebook page<\/a>. Please join us again on July 12, 2019 in Milan, Italy!\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"35980,35992,36004,36016,36028,36040,36064,36052,37516,37504,37492,37480,37468,37456,37444,37432,37408,37396,37384,37372,37360,37348,37336,37324,37312,37300,37288,37276,37264,37252,37240,37228,37216,37204,37192,37180,37168,37156,37144,37132,37120,37108,37096,37084,37072,37060,37048,37036,37024,37012,37000,36988,36976,36964,36952,36940,36928,36916,36904,36892,36880,36868,36856,36844,36832,36820,36808,36796,36784,36772,36760,36748,36736,36724,36712,36700,36688,36676,36664,36652,36640,36628,36616,36604,36592,36580,36568,36556,36544,36532,36520,36508,36496,36484,36472,36460,36448,36436,36424,36412,36400,36388,36376,36364,36352,36340,36328,36316,36304,36292,36280,36268,36256,36244,36232,36220,36208,36196,36184,36172,36160,36148,36136,36124,36112,36100,36088,36076,37528\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4862],"tags":[],"class_list":["post-102344","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-pasient-og-familiesamlinger"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102344","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=102344"}],"version-history":[{"count":43,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102344\/revisions"}],"predecessor-version":[{"id":173605,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102344\/revisions\/173605"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/173037"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=102344"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=102344"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=102344"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}