{"id":118077,"date":"2023-04-23T06:01:34","date_gmt":"2023-04-23T11:01:34","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=118077"},"modified":"2026-07-10T13:34:54","modified_gmt":"2026-07-10T18:34:54","slug":"8-a-reunion-anual-de-pacientes-y-familiares-del-ecd-en-rochester-minnesota","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/8th-annual-ecd-patient-family-gathering-rochester-mn\/","title":{"rendered":"8.\u00ba Encuentro Anual de Pacientes y Familiares de ECD, Rochester (Minnesota)"},"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=”Dr. Ronald Go, MD & Gaurav Goyal, 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=”Mayo Clinic” _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=”Rochester, MN” _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=”April 27, 2023″ _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” 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_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/07\/8th-pfg.png” title_text=”8th 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

\n
\n

Rochester Patient & Family Gathering Group Picture 2023<\/p>\n<\/div>\n<\/div>\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=”10px||||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” 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 2023 Patient & Family Gathering (PFG) brought together 59 patients and family members from the US and Canada. This was the first in-person, international conference held by the ECDGA following the COVID pandemic. The patient\/family community was joined by 41 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Twelve 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\/2023_Event_Program_PFG_Cover.jpeg” title_text=”2023_Event_Program_PFG_Cover” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2023-Event-Program-PFG-afternoon-4.14-Copy.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=”#b2b2b2″ 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_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=”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

Presentations<\/h2>\n

[\/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”]The following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more about ECD. 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 _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\n\t
Presenter<\/th>Presentation Slides<\/th>Presentation Videos<\/th>\n<\/tr>\n<\/thead>\n
Ronald Go, MD
\nGuarav Goyal, MD<\/td>		<\/td>Welcome<\/a><\/td>\n<\/tr>\n
Brewer Kathy, Founder, ECDGA<\/td>ECDGA Successes<\/a><\/td>ECDGA Successes<\/a><\/td>\n<\/tr>\n
Hendrie Paul, MD, Board Member<\/td>Focus on the Future<\/a><\/td>Focus on the Future<\/a><\/td>\n<\/tr>\n
Jacobsen Eric, MD<\/td>Erdheim-Chester Disease: Overview of Biology, Clinical Presentation, and Management<\/a><\/td>Erdheim-Chester Disease: What Do We Know a Century Later<\/a><\/td>\n<\/tr>\n
Abeykoon Jithma, MD<\/td>Prescriptions for a Rare Disease. Is There a Cure?<\/a><\/td>Prescriptions for a Rare Disease Video<\/a><\/td>\n<\/tr>\n
Diamond Eli, MD<\/td>A Balancing Act: Treating Disease and Side Effects<\/a><\/td>Treating the Disease and the Side Effects: A Balancing Act<\/a><\/td>\n<\/tr>\n
Tobin Oliver, MD<\/td>It\u2019s Not All in the Head: ECD and the Brain<\/a><\/td>It\u2019s Not All in the Head: ECD and the Brain<\/a><\/td>\n<\/tr>\n
Shekhar Skand, MD<\/td>Hormonal Woes \u2013 Finding the Right Balance<\/a><\/td>Hormonal Woes Finding the Right Balance<\/a><\/td>\n<\/tr>\n
D\u2019Andre Stacy, MD<\/td>Integrative Oncology<\/a><\/td>Integrative Oncology<\/a><\/td>\n<\/tr>\n
O\u2019Brien Kevin, NP<\/td>Depression and Anxiety in Serious Chronic Illness<\/a><\/td>Depression and Anxiety in Serious Chronic Illness: Diagnosis and Management<\/a><\/td>\n<\/tr>\n
Nielsen Alice<\/td><\/td>Alice Nielsen \u2013 Patient Story<\/a>Alice Nielsen \u2013 Patient Story<\/td>\n<\/tr>\n
Atnip Barry<\/td><\/td>Barry Atnip \u2013 Patient Story<\/a><\/td>\n<\/tr>\n
Abeykoon Jithma, MD
\nDiamond Eli, MD
\nGoyal Guarav, MD
\nHendrie Paul, MD<\/td>		<\/td>\tQuestions & Answers with the Experts<\/a><\/td>\n<\/tr>\n
Young Angela, LSW
\nBlackmer Emily, MSW
\nBargfrede Melissa, MBA<\/td>		Patient Support Panel Discussion<\/a><\/td>Cancer Patient Navigator, Social Worker, and Financial Counselor Panel<\/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” 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

Photographs<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||0px||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Meeting Photos<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”157481,157482,157483,157484,157485,157486,157487,157488,157489,157490,157491,157492,157493,157494,157495,157496,157497,157498,157499,157500,157501,157502,157503,157504,157505,157506,157507,157508,157509,157510,157511,157512,157513,157514,157515,157516,157517,157518,157519,157520,157521,157522,157523,157524,157525,157526,157527,157528,157529,157530,157531,157532,157533,157534,157535,157536,157537,157538,157539,157540,157541,157542,157543,157544,157545,157546,157547,157548,157549,157550,157551,157552,157553,157554,157555,157556,157557,157558,157559,157560,157561,157562,157563,157564,157565,157566,157567,157568,157569,157570,157571,157572,157573,157574,157575,157576″ 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_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||0px||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Reception\/Dinner Photos<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”157577,157578,157579,157580,157581,157582,157583,157584,157585,157586,157587,157588,157589,157590,157591,157592,157593,157594,157595,157596,157597,157598,157599,157600,157601,157602,157603,157604,157605,157606,157607,157608,157609,157610,157611,157612,157613,157614,157615,157616,157617,157618,157619,157620,157621,157622,157623,157624,157625,157626,157627,157628,157629,157630,157631,157632,157633,157634,157635,157636,157637,157638,157639,157640,157641,157642,157643,157644,157645,157646,157647,157648,157649,157650,157651,157652,157653,157654,157655,157656,157657,157658,157659,157660,157661,157662,157663,157664″ 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” locked=”off” 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||0px||false|false” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Meet & Greet Photos<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”157665,157666,157667,157668,157669,157670,157671,157672,157673,157674,157675,157676,157677,157678,157679,157680,157681,157682,157683,157684,157685,157686,157687,157688,157689,157690,157691,157692,157693,157694,157695,157696,157697,157698,157699,157700,157701,157702,157703,157704,157705,157706,157707″ 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” locked=”off” 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":"

Rochester Patient & Family Gathering Group Picture 2023 Patient & Family Gathering SummaryThe 2023 Patient & Family Gathering (PFG) brought together 59 patients and family members from the US and […]<\/p>\n","protected":false},"author":20,"featured_media":172588,"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":[4816],"tags":[],"class_list":["post-118077","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-family-gathering"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/118077","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=118077"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/118077\/revisions"}],"predecessor-version":[{"id":174047,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/118077\/revisions\/174047"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/172588"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=118077"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=118077"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=118077"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}