{"id":117049,"date":"2015-03-15T05:58:35","date_gmt":"2015-03-15T10:58:35","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=117049"},"modified":"2026-07-10T13:41:50","modified_gmt":"2026-07-10T18:41:50","slug":"3rd-annual-ecd-patient-family-gathering-houston-tx","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/3rd-annual-ecd-patient-family-gathering-houston-tx\/","title":{"rendered":"3rd Annual ECD Patient & Family Gathering Houston, TX"},"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=”Filipe Janku, MD, PhD” _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=”MD Anderson” _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=”Houston, TX” _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=”October 9, 2015″ _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\/3rd-pfg.png” title_text=”3rd 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

Houston International ECD Patient & Family Gathering Group Picture 2015<\/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 2015 Patient & Family Gathering (PFG) brought together 78 patients and family members from five countries. The patient\/family community was joined by 52 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Twenty-four medical professionals and 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\/Picture16-1.png” title_text=”Picture1(6)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2015-PFG-Program-Final-kb.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_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=”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_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]Please see the following presentations from the 2015 Patient Gathering in Houston, TX.[\/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\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\n\t
Presenter<\/th>Presentation(s)<\/th>Videos<\/th>\n<\/tr>\n<\/thead>\n
Timothy Craig Allen, MD, JD<\/td>Social Media in the Rare Disease World<\/a><\/td>Not available.<\/td>\n<\/tr>\n
Naifa Lamki Busaidy, MD<\/td>ECD & Hormones<\/a><\/td>Not available.<\/td>\n<\/tr>\n
Jean Campbell<\/td>Power of Patient Groups<\/a><\/td>The Power of Patient Groups<\/a><\/td>\n<\/tr>\n
Susan Y. Chon, MD<\/td>Not available.<\/td>ECD and Skin<\/a><\/td>\n<\/tr>\n
Maxine Grace de la Cruz, MD<\/td>ECD & Pain Management<\/a><\/td>ECD and Pain Management<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>Braf Negative; ECD & Brain<\/a><\/td>Not available.<\/td>\n<\/tr>\n
Nancy K. Feeley, RN, MS, CRNP<\/td>ECD & Exercise<\/a><\/td>ECD and Exercise<\/a><\/td>\n<\/tr>\n
Horiana Grosu, MD<\/td>ECD & Lungs<\/a><\/td>ECD and the Lungs<\/a><\/td>\n<\/tr>\n
Saamir Hassan, MD<\/td>ECD & Heart<\/a><\/td>ECD and the Heart<\/a><\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>Importance of Clinical Trials<\/a><\/td>The Importance of Clinical Trials<\/a><\/td>\n<\/tr>\n
Cynthia Kizer, RN, BSN<\/td>Insurance Appeals<\/a><\/td>ECD and Insurance Approval Issues<\/a><\/td>\n<\/tr>\n
Chaplain Richard T. Maddox, BCC<\/td>Facing Key Spiritual Care Issues<\/a><\/td>Facing Key Spiritual Issues<\/a><\/td>\n<\/tr>\n
Kenneth L. McClain, MD, PhD<\/td>ECD101<\/a><\/td>ECD 101<\/a><\/td>\n<\/tr>\n
Omar Ozgur, MD<\/td>ECD & Eyes<\/a><\/td>ECD and Eyes<\/a><\/td>\n<\/tr>\n
Susan Robertson, PhD, OTR\/L, FAOTA<\/td>Financial Stability & SSI<\/a><\/td>ECD and Social Security Applications<\/a><\/td>\n<\/tr>\n
Robert Zieve, MD<\/td>Integrative Medicine<\/a><\/td>Not available.<\/td>\n<\/tr>\n
Juvianee Estrada-Veras, MD<\/td>ECD & Genetics<\/a><\/td>ECD & Genetics<\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>Importance of Clinical Trials<\/a><\/td>Importance of Clinical Trials<\/a><\/td>\n<\/tr>\n
Achille Aouba, MD, Julien Haroche, MD, PhD, Lorenzo Dagna, MD, Filip Janku, MD, PhD, Eli Diamond, MD, Kenneth McClain, MD, Juvianee Estrada-Veras, MD, Augusto Vaglio, MD, PhD<\/td>ECD Studies
\nExplanation & Updates<\/td>		ECD Studies Explanation & Updates<\/a><\/td>\n<\/tr>\n
Paul Scheel, MD<\/td>ECD & Kidney<\/a><\/td>ECD & Kidney<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD<\/td>BRAF Negative Discussion<\/a><\/td>BRAF Negative Discussion<\/td>\n<\/tr>\n
Tamara Barnes, MSN &
\nNancy Feeley, RN, MS, CRNP<\/td>		Patient Panel<\/td>Patient Panel<\/td>\n<\/tr>\n
Danetta Sloan, PhD<\/td>Caregiver Sharing<\/td>Caregiver Sharing<\/td>\n<\/tr>\n
Tamara Barnes, MSN, RN<\/td>Patient Sharing<\/td>Patient Sharing<\/td>\n<\/tr>\n
Susan Robertson, PhD<\/td>Functional Adaptation<\/td>Functional Adaptation<\/td>\n<\/tr>\n
Robert Zieve, MD<\/td>Integrative Cancer Medicine<\/a><\/td>Integrative Cancer Medicine<\/td>\n<\/tr>\n
Crump, Dooley, Nilsen, Bunge<\/td>Patient Stories<\/a><\/td>Patient Stories<\/a><\/td>\n<\/tr>\n
ECDGA Team<\/td>Call for Involvement<\/td>Call for Involvement<\/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=”40037,40049,40061,40073,40085,40097,40109,40121,40133,40145,40157,40169,40181,40193,40205,40217,40229,40241,40253,40265,40277,40289,40301,40313,40325,40337,40349,40361,40373,40385,40397,40409,40421,40433,40445,40457,40469,40481,40493,40505,40517,40529,40541,40553,40565,40577,40589,40601,40613,40625,40637,40649,40661,40673,40685,40697,40709,40721,40733,40745,40757,40769,40781,40793,40805,40817,40829,40841,40853,40865,40877,40889,40901,40913,40925,40937,40949,40961,40973,40985,40997,41009,41021,41033,41045,41057,41069,41081,41093,41105,41117,41129,41141,41153,41165,41177,41189,41201,41213,41225,41237,41249,41261,41273,41285,41297,41309,41321,41333,41345,41357,41369,41381,41393,41405,41417,41429,41441,41453,41465,41477,41489,41501″ 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":"

Houston International ECD Patient & Family Gathering Group Picture 2015 Patient & Family Gathering SummaryThe 2015 Patient & Family Gathering (PFG) brought together 78 patients and family members from five […]<\/p>\n","protected":false},"author":20,"featured_media":172593,"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-117049","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-family-gathering"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/117049","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=117049"}],"version-history":[{"count":4,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/117049\/revisions"}],"predecessor-version":[{"id":174061,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/117049\/revisions\/174061"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/172593"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=117049"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=117049"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=117049"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}