Milan International ECD Patient & Family Gathering Group Picture 2019<\/p>\n<\/div>\n<\/div>\n
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Patient & Family Gathering Summary<\/h2>\n
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The 2019 Patient & Family Gathering (PFG) brought together 49 patients and family members from 10 countries. The patient\/family community was joined by 38 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Ten 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.<\/p>\n
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Programs with Gathering Agenda<\/h2>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,1_4,1_4,1_4″ 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||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_column type=”1_4″ _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\/Picture12.png” title_text=”Picture1(2)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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.png” title_text=”Picture1(3)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program-1.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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.png” title_text=”Picture1(4)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/German-program-final.pdf” url_new_window=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture15.png” title_text=”Picture1(5)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Italian-Program-Final.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/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 _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
Presentation<\/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 following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more about ECD<\/a>. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.[\/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”]\n
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<\/a>Location:<\/strong> Milan, Italy\r\n\r\n2019 Patient & Family Gathering Schedule of Events<\/strong>\r\n\r\nAll patients and loved ones interested in learning more about ECD and meeting other families are encouraged to attend the following events. The registration fee for the 2-day event includes access to all conference sessions, reception dining, as well as lunch and light refreshments during conference break times. The following meeting times are subject to change.\r\n\r\nAll events will be held at<\/strong>\r\nIRCCS San Raffaele Scientific Institute<\/strong>\r\nVita-Salute San Raffaele University\r\nVia Olgettina, 60\r\nI-20132 Milano \u2013 Italy\r\n\r\n[table id=31 \/]\r\n\r\nHotel & Lodging<\/strong>\r\n\r\nHotel Rafael is the recommended location for your event lodging. This hotel is conveniently located across the courtyard to the hospital\u2019s meeting spaces. There is no room block contracted by the ECDGA for this hotel; therefore, we recommend booking your room as soon as possible to ensure room availability. Follow the hotel\u2019s website for more information and to make a reservation.