{"id":122943,"date":"2014-03-31T09:21:41","date_gmt":"2014-03-31T14:21:41","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=122943"},"modified":"2026-07-23T07:23:38","modified_gmt":"2026-07-23T12:23:38","slug":"2-incontro-annuale-delle-famiglie-dei-pazienti-affetti-da-ecd-a-bethesda-maryland","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/2nd-annual-ecd-patient-family-gathering-bethesda-md\/","title":{"rendered":"2\u00b0 Incontro annuale dei pazienti e delle famiglie dell\u2019ECD, Bethesda, MD"},"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=”Juvianee Estrada-Veras, 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=”National Institutes of Health” _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=”Bethesda, MD 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=”September 18-19, 2014″ _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\/2nd-pfg.png” title_text=”2nd pfg” align=”center” force_fullwidth=”on” module_class=”past-event-image” _builder_version=”4.27.7″ _module_preset=”default” custom_margin=”||10px||false|false” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}” theme_builder_area=”post_content” 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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Bethesda Patient & Family Gathering Group Picture 2014<\/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 2014 Patient & Family Gathering (PFG) brought together approximately 94 patients and family members from 13 countries. The patient\/family community was joined by 53 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Twenty-five 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\/Picture17.png” title_text=”Picture1(7)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2014_08_PFG_Final_Program-1.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\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>Video (no videos made during this meeting)<\/th>\n<\/tr>\n<\/thead>\n
William Gahl, MD, PhD<\/td>Rare Diseases and the National Institutes of Hope<\/td><\/td>\n<\/tr>\n
Mark Heaney, MD, PhD (chair)
\nLorenzo Dagna, MD
\nEli Diamond, MD
\nJulien Haroche, MD, PhD
\nAugusto Vaglio, MD<\/td>		ECD Treatment Panel<\/td><\/td>\n<\/tr>\n
Juvianee Estrada-Veras, MD (chair)
\nGiulio Cavalli, MD
\nMark Heaney, MD, PhD
\nJulien Haroche, MD, PhD
\nPeter Hillman, MD<\/td>		Current ECD Studies \/ Research Panel<\/td><\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD (chair)
\nLorenzo Dagna, MD
\nEli Diamond, MD
\nJuvianee Estrada-Veras, MD
\nPeter Hillman, MD
\nDavid Hyman, MD
\nAndrew Talbot, MD<\/td>		Q&A Panel<\/td><\/td>\n<\/tr>\n
Ann Berger, MD<\/td>epoint.com\/:p:\/r\/sites\/EventTeam\/Shared%20Documents\/2014%20Bethesda\/Presenter%20Presentations\/Integrative%20Pain%20Management.ppt?d=we040f46d527846abbac0a6073bf3c39d&csf=1&web=1&e=J5FhtV\" target=\"_blank\">Integrative Pain Management<\/a><\/td><\/td>\n<\/tr>\n
Ann T. Acevedo, MD<\/td>Exercise in Erdheim-Chester Disease<\/td><\/td>\n<\/tr>\n
Zavera Brandon, MPT, DPT<\/td>Focus on Function: Role of Physical Therapy<\/td><\/td>\n<\/tr>\n
Terri D. Nguyen, MOT, OTR-C<\/td>Focus on Function: The Role of Occupational Therapy<\/td><\/td>\n<\/tr>\n
E. Caroline Mason & Diana Varela<\/td>Understanding the Social Security Disability Program<\/td><\/td>\n<\/tr>\n
Pamela Gardner, DMD<\/td>Oral Manifestations of ECD<\/td><\/td>\n<\/tr>\n
Ann Berger, MD<\/td>Caring for the Caregiver<\/td><\/td>\n<\/tr>\n
Melissa Merideth, MD, MPH<\/td>Obstetrics and Gynecologic Health in Patients with ECD<\/td><\/td>\n<\/tr>\n
Susan Robertson, PhD<\/td>The Social Security Application: Tips & Strategies<\/td><\/td>\n<\/tr>\n
Ann Berger, MD<\/td>sites\/EventTeam\/Shared%20Documents\/2014%20Bethesda\/Presenter%20Presentations\/Religion%20versus%20Spirituality.pptx?d=w1bd5179f6d6c403dbc1307876ef3f3eb&csf=1&web=1&e=wIbFcR\" target=\"_blank\">Awakening the Spiritual Dimension of Oneself<\/a><\/td><\/td>\n<\/tr>\n
Kathy Brewer<\/td>The Business of Creating Hope \u2013 With You<\/a><\/td><\/td>\n<\/tr>\n
Eli Diamond, MD<\/td>Patient Stories<\/td><\/td>\n<\/tr>\n
Danetta Sloan, PhD<\/td>Caregiving in the World of ECD<\/td><\/td>\n<\/tr>\n
Karla D. Toledo-Frazzini, MD<\/td>oint.com\/:p:\/r\/sites\/EventTeam\/Shared%20Documents\/2014%20Bethesda\/Presenter%20Presentations\/Bethesda%20ECD%20power%20point.pptx?d=w7c1ac3d4ae26478fbc06f5dd5a61f239&csf=1&web=1&e=bIi6Jo\" target=\"_blank\">Family and Community Medicine<\/a><\/td><\/td>\n<\/tr>\n
Megan Wright, RD<\/td>Nutrition & Erdheim-Chester Disease<\/a><\/td><\/td>\n<\/tr>\n
Kevin O\u2019Brien, RN, MS-CRNP<\/td>Ideas to Take Back to Your Medical Team<\/td><\/td>\n<\/tr>\n
ECDGA Team<\/td>Get Involved to Create Hope<\/td><\/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 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":"

Bethesda Patient & Family Gathering Group Picture 2014 Patient & Family Gathering SummaryThe 2014 Patient & Family Gathering (PFG) brought together approximately 94 patients and family members from 13 countries. […]<\/p>\n","protected":false},"author":14,"featured_media":172592,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\r\n\r\n\r\n
2nd Annual Conference<\/td>\r\nNational Institute of Health<\/td>\r\nBethesada, MD<\/td>\r\n<\/td>\r\nJuvinee Estrada-Veras, MD<\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>","_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-122943","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-family-gathering"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/122943","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=122943"}],"version-history":[{"count":4,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/122943\/revisions"}],"predecessor-version":[{"id":174239,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/122943\/revisions\/174239"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/172592"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=122943"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=122943"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=122943"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}