{"id":102345,"date":"2018-05-16T19:44:54","date_gmt":"2018-05-17T00:44:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/6-jaehrliches-internationales-ecd-patienten-und-familientreffen-orlando-fl\/"},"modified":"2026-06-18T09:56:06","modified_gmt":"2026-06-18T14:56:06","slug":"6-jaehrliches-internationales-ecd-patienten-und-familientreffen-orlando-fl","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/de\/6-jaehrliches-internationales-ecd-patienten-und-familientreffen-orlando-fl\/","title":{"rendered":"6. j\u00e4hrliches ECD-Patienten- und Familientreffen 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=”{}” 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||false|false” 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=”Julio Hajdenberg, 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” global_colors_info=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][\/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=”{}” 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_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture16.png” title_text=”Orlando PFG” 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=”{}” theme_builder_area=”post_content”][\/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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Internationales ECD-Patienten- und Familientreffen Orlando \u2013 Gruppenfoto 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=”{}” 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 _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

Zusammenfassung des Patienten- und Familientreffens<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]Das Patienten- und Familientreffen (PFG) 2018 brachte 75 Patienten und Familienmitglieder aus 4 L\u00e4ndern zusammen. Die Patienten- und Familiengemeinschaft wurde von 44 \u00c4rzten und Wissenschaftlern begleitet, die sich leidenschaftlich f\u00fcr die Betreuung von Patienten und das Verst\u00e4ndnis der Erdheim-Chester-Erkrankung einsetzen. Vierzehn \u00c4rzte\/Wissenschaftler hielten Vortr\u00e4ge \u00fcber ECD und die Unterst\u00fctzungsbed\u00fcrfnisse bei ECD. Ein Festessen mit allen Teilnehmern erm\u00f6glichte Zeit f\u00fcr geselliges Beisammensein und die Anerkennung von F\u00fchrungspers\u00f6nlichkeiten der Gemeinschaft, die ihre Zeit und Ressourcen der ECD-Gemeinschaft widmen. Weitere Informationen zu den PFG-Aktivit\u00e4ten und Pr\u00e4sentationen sowie Fotos von der Konferenz finden Sie in den unten stehenden Materialien.[\/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

Programme mit der Agenda des Treffens<\/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\/Picture13-1.png” title_text=”Bild1(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” hover_enabled=”0″ border_radii=”on|8px|8px|8px|8px” border_width_all=”1px” border_color_all=”#b2b2b2″ 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||0px||false|false” locked=”off” 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

Pr\u00e4sentation<\/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=”{}” 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 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\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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Fotografien<\/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

Fotos des Empfangs<\/h3>\n

Die folgenden Fotos wurden w\u00e4hrend des ECD Patient & Family Gathering Reception mit medizinischen Fachkr\u00e4ften und ECD Familien am 15. November 2018 im Orlando Health Regional Medical Center aufgenommen. Vielen Dank an alle Teilnehmer f\u00fcr ihre Teilnahme und ihr Engagement f\u00fcr die Gemeinschaft. Weitere Fotos finden Sie auf Facebook unter dem Suchbegriff #ECDGA18 oder direkt auf unserer ECDGA Facebook-Seite<\/a>. <\/p>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”35540,35552,35564,35576,35588,35600,35612,35624,35636,35648,35660,35672,35684,35696,35708,35720,35732,35744,35756,35768,35780,35792,35804,35816,35828,35840,35852,35864,35876,35888,35900,35912,35924,35936,35948,35960,35972″ 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

Fotos vom Patiententreffen<\/h3>\n

Die folgenden Fotos wurden w\u00e4hrend des ECD Patienten- und Familientreffens am 16. November 2018 im Orlando Health – Orlando Regional Medical Center aufgenommen. Vielen Dank an alle Teilnehmer f\u00fcr die Teilnahme an dem Treffen und die geselligen Stunden, die eine gro\u00dfartige Unterst\u00fctzung und Verbindungen innerhalb dieser Gemeinschaft erm\u00f6glicht haben. Weitere Fotos finden Sie auf Facebook unter dem Suchbegriff #ECDGA18 oder direkt auf unserer ECDGA Facebook-Seite<\/a>. Bitte kommen Sie am 12. Juli 2019 wieder nach Mailand, Italien! <\/p>\n

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Internationales ECD-Patienten- und Familientreffen Orlando \u2013 Gruppenfoto 2018 Zusammenfassung des Patienten- und FamilientreffensDas Patienten- und Familientreffen (PFG) 2018 brachte 75 Patienten und Familienmitglieder aus 4 L\u00e4ndern zusammen. Die Patienten- und […]<\/p>\n","protected":false},"author":20,"featured_media":77367,"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":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4859],"tags":[],"class_list":["post-102345","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-treffen-von-patienten-und-familien"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102345","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/comments?post=102345"}],"version-history":[{"count":11,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102345\/revisions"}],"predecessor-version":[{"id":161233,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102345\/revisions\/161233"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media\/77367"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media?parent=102345"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/categories?post=102345"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/tags?post=102345"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}