Orlando International ECD Patient & Family Gathering Group Picture 2018<\/p>\n<\/div>\n<\/div>\n
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Patient & Family Gathering Summary<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]The 2018 Patient & Family Gathering (PFG) brought together 75 patients and family members from 4 countries. The patient\/family community was joined by 44 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Fourteen clinicians\/scientists provided talks on ECD and ECD support needs. A Celebration Dinner with all attendees was enjoyed, allowing time for fellowship and recognition of community leaders who dedicate their time and resources to aid the ECD community. Please see the information below for more on the PFG activities and presentations, as well as pictures from the conference.[\/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
Programs with Gathering Agenda<\/h2>\n
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Presentation<\/h2>\n
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![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/12\/All-Attendee-Group-Photo-2.jpg\")
<\/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