{"id":123035,"date":"2013-01-31T09:25:17","date_gmt":"2013-01-31T15:25:17","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=123035"},"modified":"2026-07-10T13:43:01","modified_gmt":"2026-07-10T18:43:01","slug":"1st-annual-ecd-patient-family-gathering-san-diego-ca","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/1st-annual-ecd-patient-family-gathering-san-diego-ca\/","title":{"rendered":"\u05d4\u05de\u05e4\u05d2\u05e9 \u05d4\u05e9\u05e0\u05ea\u05d9 \u05d4\u05e8\u05d0\u05e9\u05d5\u05df \u05e9\u05dc ECD \u05dc\u05d7\u05d5\u05dc\u05d9\u05dd \u05d5\u05d1\u05e0\u05d9 \u05de\u05e9\u05e4\u05d7\u05d5\u05ea\u05d9\u05d4\u05dd, \u05e1\u05df \u05d3\u05d9\u05d9\u05d2\u05d5, \u05e7\u05dc\u05d9\u05e4\u05d5\u05e8\u05e0\u05d9\u05d4"},"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||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=”San Diego, CA USA” _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=”November 1-2, 2013″ _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\/07\/1st-pfg.png” title_text=”1st pfg” align=”center” force_fullwidth=”on” module_class=”past-event-image” _builder_version=”4.27.7″ _module_preset=”default” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}” theme_builder_area=”post_content” custom_margin=”||10px||false|false” 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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San Diego Patient & Family Gathering Group Picture 2013<\/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 _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

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 first 2013 Patient & Family Gathering (PFG) brought together approximately 54 patients and family members. This conference was not co-hosted by any medical institution and was born of a \u2018If we build it, they will come\u201d belief. The timing was right, and interested parties came, beginning a movement of collaboration among scientists, clinicians, patients, family members, and advocates that remains strong today. Attendees came from eight countries<\/p>\n

The patient\/family community was joined by 32 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Thirteen 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

[\/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\/2013_Patient_Family_Gathering_Cover.jpeg” title_text=”2013_Patient_Family_Gathering_Cover” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Patient-Gathering-Program-2013-San-Diego.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=”#bfbfbf” global_colors_info=”{}” theme_builder_area=”post_content”][\/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” 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_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 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\n\t\n\t\n\t
Presenter<\/th>Presentation Slides (no slide decks available)<\/th>Presentation Video<\/th>\n<\/tr>\n<\/thead>\n
Timothy Vollmer, MD<\/td>Role of diet and exercise in neurologic disease<\/td>Role of diet and exercise in neurologic disease<\/a><\/td>\n<\/tr>\n
Lorenzo Dagna, MD (chair)
\nAchille Aouba, MD
\nMark Heaney, MD, PhD
\nDavid Hyman, MD<\/td>		ECD Treatment Options \u2013 Panel Discussion<\/td>ECD Treatment Options \u2013 Panel Discussion<\/a><\/td>\n<\/tr>\n
Juvianee Estrada-Veras, MD (chair)
\nOmar Abdel-Wahab, MD
\nLorenzo Dagna, MD
\nAugusto Vaglio, MD<\/td>		Current ECD Studies\/ Research \u2013 Panel Discussion<\/td>Not available<\/td>\n<\/tr>\n
Omar Abdel-Wahab, MD<\/td>Round table discussion with all Medical Professionals in attendance<\/td>Not available<\/td>\n<\/tr>\n
Caroline Bjonback, MD<\/td>Alternative Medicine as Adjuncts to Traditional Medicine<\/td>Not available<\/td>\n<\/tr>\n
Ana Acevedo, MD<\/td>Physical Therapy and ECD<\/td>Not available<\/td>\n<\/tr>\n
Allan Goldstein
\nCassondra Graff, MS, LCSW<\/td>		Mindfulness Techniques<\/td>Mindfulness Techniques<\/td>\n<\/tr>\n
Cindy Livings, RN<\/td>Communicating With Medical Professionals & Keeping Medical Records <\/td>Communicating With Medical Professionals & Keeping Medical Records <\/a><\/td>\n<\/tr>\n
ECD Global Alliance<\/td>Organizational Overview and Direction Setting<\/td>Not available<\/td>\n<\/tr>\n
Ted File<\/td>Enjoying San Diego<\/td>Not available<\/td>\n<\/tr>\n
Gadi Bauchman<\/td>ECD \u2013 A Personal Account<\/td>Not available<\/td>\n<\/tr>\n
All in attendance<\/td>Patient Round Table Discussions<\/td>Not available<\/td>\n<\/tr>\n
Gordon Saxe, MD<\/td>5 Pillars of a Healthy Diet<\/td>Not available<\/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

Photographs<\/h2>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”161569,161571,161573,161575,161578,161580,161581,161583,161585,161588,161590,161592,161594,161595,161596″ 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=”5.6″ 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":"

San Diego Patient & Family Gathering Group Picture 2013 Patient & Family Gathering SummaryThe first 2013 Patient & Family Gathering (PFG) brought together approximately 54 patients and family members. This […]<\/p>\n","protected":false},"author":14,"featured_media":172591,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"November 1, 2013 San Diego, CA","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4816],"tags":[],"class_list":["post-123035","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-family-gathering"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/123035","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/comments?post=123035"}],"version-history":[{"count":4,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/123035\/revisions"}],"predecessor-version":[{"id":174067,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/posts\/123035\/revisions\/174067"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media\/172591"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/media?parent=123035"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/categories?post=123035"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/he\/wp-json\/wp\/v2\/tags?post=123035"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}