{"id":102322,"date":"2017-04-27T19:09:39","date_gmt":"2017-04-28T00:09:39","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/5e-jaarlijkse-internationale-bijeenkomst-voor-ecd-patienten-en-gezinnen-new-york-ny\/"},"modified":"2026-06-18T09:57:09","modified_gmt":"2026-06-18T14:57:09","slug":"5e-jaarlijkse-internationale-bijeenkomst-voor-ecd-patienten-en-gezinnen-new-york-ny","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/5e-jaarlijkse-internationale-bijeenkomst-voor-ecd-patienten-en-gezinnen-new-york-ny\/","title":{"rendered":"5e jaarlijkse ECD-bijeenkomst voor pati\u00ebnten en familie in New York, NY"},"content":{"rendered":"

[et_pb_section fb_built=”1″ disabled_on=”off|off|off” _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”20px||0px||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”][\/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|0px|0px|false|true” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_button button_text=”Eli Diamond, MD & Mark Heaney, MD” _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” custom_padding=”|0px||20px|false|false” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”Memorial Sloan Kettering Cancer Center (MSKCC)” _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=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”New York, NY” _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=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”27 oktober 2017″ _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=”{}” theme_builder_area=”post_content”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row disabled_on=”off|off|off” _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” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture12-1.png” title_text=”NY PFG” align=”center” force_fullwidth=”on” module_class=”event-image” _builder_version=”4.27.6″ _module_preset=”default” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][\/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=”{}” theme_builder_area=”post_content”]<\/p>\n

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Groepsfoto bijeenkomst voor pati\u00ebnten & familie New York 2017<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ disabled_on=”off|off|off” _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”0px||||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”][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” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text disabled_on=”off|off|off” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||15px||false|false” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Samenvatting pati\u00ebnten- en familiebijeenkomst<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″]De Patient & Family Gathering (PFG) van 2017 bracht 93 pati\u00ebnten en familieleden uit 6 landen samen. De pati\u00ebnten- en familiecommunity werd vergezeld door 65 clinici en wetenschappers die gepassioneerd zijn over de zorg voor pati\u00ebnten en het vergaren van meer kennis over de ziekte van Erdheim-Chester. Vijftien clinici\/wetenschappers gaven presentaties over ECD en de ondersteuningsbehoeften bij ECD. Er werd genoten van een feestelijk diner met alle aanwezigen, wat ruimte bood voor onderling contact en erkenning van gemeenschapsleiders die hun tijd en middelen inzetten om de ECD-gemeenschap te helpen. Zie de onderstaande informatie voor meer over de PFG-activiteiten en presentaties, evenals foto’s van de conferentie.[\/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” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Programma’s met de agenda van de bijeenkomst<\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture14-1.png” title_text=”Afbeelding1(4)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2017-PFG-Program-Draft-Review.pdf” url_new_window=”on” _builder_version=”4.27.6″ _module_preset=”default” hover_enabled=”0″ border_radii=”on|8px|8px|8px|8px” global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”]<\/p>\n

Presentatie<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]De volgende presentaties zijn toegevoegd in de hoop dat ze pati\u00ebnten, families en artsen zullen helpen die meer willen leren over ECD<\/a>. De ECDGA is dankbaar voor de inspanningen en bijdragen van de medische gemeenschap om de zorg voor ECD-pati\u00ebnten te verbeteren.[\/et_pb_text][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]<\/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
Presenter<\/th>Slides<\/th>\n<\/tr>\n<\/thead>\n
Craig Blinderman, MD, MA, FAAHPM<\/td>Pain management in Erdheim-Chester Disease<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain Slides coming soon<\/td>\n<\/tr>\n
Mary Elizabeth Davis, RN, MSN, AOCNS and Allison Hyde, RN, BSN<\/td>Demystifying the Clinical Trial<\/a>
\nSee also printable ECD Studies & Trials Guide<\/a><\/td>\n<\/tr>\n
Ronald Go, MD<\/td>ECD Treatment Options<\/a><\/td>\n<\/tr>\n
Mark Heaney, MD<\/td>An Overview of ECD<\/a><\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>ECD and Clinical Trials<\/a>
\nSee also printable ECD Studies & Trials Guide<\/a><\/td>\n<\/tr>\n
Meenal Kheterpal, MD<\/td>Skin Care Pearls ECD Management<\/a><\/td>\n<\/tr>\n
Andy J. Roth, MD<\/td>Psychological Effects on the Chronically Ill and Their Families<\/a><\/td>\n<\/tr>\n
Buster Brewer, Jessica Corkran, Kathy Brewer<\/td>ECDGA Close<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\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” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”]<\/p>\n

Foto’s<\/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=”{}” theme_builder_area=”post_content”]<\/p>\n

Foto’s van de receptie<\/h3>\n

De volgende foto’s zijn genomen tijdens de receptie van de ECD-bijeenkomst voor pati\u00ebnten en families met medische professionals en ECD-gezinnen op 26 oktober 2017 in New York, NY. Dank aan alle deelnemers voor hun aanwezigheid en betrokkenheid bij de gemeenschap. Sluit u<\/a> op 15 november 2018 in Orlando gerust weer bij ons aan![\/et_pb_text][et_pb_gallery gallery_ids=”37656,37668,37680,37692,37704,37716,37728,37740,37752,37764,37776,37788,37800,37812,37824,37836,37848,37860,37872,37884,37896,37908,37920,37932,37944,37956,37968,37980,37992,38004,38016,38028,38040,38052,38064,38076,38088,38100,38112,38124,38136,38148,38160,38172,38184,38196,38208,38220,38232,38244,38256,38268,38280,38292,38304,38316,38328,38340,38352,38364,38376,38388,38400,38412,38424,38436,38448,38460,38472,38484,38496,38508,38520,38532,38544,38556,38568,38580,38592,38604,38616,38628,38640,38652,38664,38676,38688,38700,38712,38724,38736,38748,38760,38772,38784,38796,38808″ posts_number=”100″ orientation=”portrait” show_title_and_caption=”off” module_class=”event-gallery” _builder_version=”4.27.6″ _module_preset=”default” db_images_per_row=”5″ db_image_max_width=”95%” db_image_max_height=”88px” db_image_row_spacing=”1%” dbdb_version=”5.1.1″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_gallery][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||20px||false|false” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Foto’s pati\u00ebntenbijeenkomst<\/h3>\n

De volgende foto’s zijn genomen tijdens de bijeenkomst ECD Patient & Family Gathering op 27 oktober 2017 in New York, NY. Hartelijk dank aan alle deelnemers voor hun deelname aan de bijeenkomst en de sociale momenten, waardoor geweldige ondersteuning en verbindingen binnen deze gemeenschap mogelijk waren. Sluit u weer bij ons aan op 15 november 2018 in Orlando![\/et_pb_text][et_pb_gallery gallery_ids=”38820,38832,38844,38856,38868,38880,38892,38904,38916,38928,38940,38952,38964,38976,38988,39000,39012,39024,39036,39048,39060,39072,39084,39096,39108,39120,39132,39144,39156,39168,39180,39192,39204,39216,39228,39240,39252,39264,39276,39288,39300,39312,39324,39336,39348,39360,39372,39384,39396,39408,39420,39432,39444,39456,39468,39480,39492,39504,39516″ posts_number=”100″ orientation=”portrait” show_title_and_caption=”off” module_class=”event-gallery” _builder_version=”4.27.6″ _module_preset=”default” db_images_per_row=”5″ db_image_max_width=”95%” db_image_max_height=”88px” db_image_row_spacing=”1%” dbdb_version=”5.1.1″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Groepsfoto bijeenkomst voor pati\u00ebnten & familie New York 2017 Samenvatting pati\u00ebnten- en familiebijeenkomstDe Patient & Family Gathering (PFG) van 2017 bracht 93 pati\u00ebnten en familieleden uit 6 landen samen. De […]<\/p>\n","protected":false},"author":20,"featured_media":135140,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4855],"tags":[],"class_list":["post-102322","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bijeenkomst-voor-patient-en-familie"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102322","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=102322"}],"version-history":[{"count":10,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102322\/revisions"}],"predecessor-version":[{"id":161284,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102322\/revisions\/161284"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/135140"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=102322"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=102322"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=102322"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}