Foto de grupo del encuentro de pacientes y familias de Nueva York 2017<\/p>\n<\/div>\n<\/div>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ disabled_on=\u00bboff|off|off\u00bb _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb10px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb width__hover_enabled=\u00bboff|desktop\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text disabled_on=\u00bboff|off|off\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
Resumen del Encuentro de Pacientes y Familias<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]El Encuentro de Pacientes y Familias (PFG) de 2017 reuni\u00f3 a 93 pacientes y familiares de 6 pa\u00edses. A la comunidad de pacientes y familiares se unieron 65 m\u00e9dicos y cient\u00edficos apasionados por atender a los pacientes y por aprender m\u00e1s sobre la enfermedad de Erdheim-Chester. Quince m\u00e9dicos y cient\u00edficos ofrecieron ponencias sobre la ECD y las necesidades de apoyo relacionadas con la ECD. Se celebr\u00f3 una cena de celebraci\u00f3n con todos los asistentes, que permiti\u00f3 disponer de tiempo para la convivencia y el reconocimiento de los l\u00edderes de la comunidad que dedican su tiempo y recursos a ayudar a la comunidad de la ECD. Consulte la informaci\u00f3n que figura a continuaci\u00f3n para obtener m\u00e1s detalles sobre las actividades y presentaciones del PFG, as\u00ed como fotograf\u00edas de la conferencia.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb10px||20px||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb width__hover_enabled=\u00bboff|desktop\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
Programas con Agenda del Encuentro<\/h2>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_3,1_3,1_3″ module_class=\u00bbsingle-line-buttons \u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture14-1.png\u00bb title_text=\u00bbImagen1(4)\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2017-PFG-Program-Draft-Review.pdf\u00bb url_new_window=\u00bbon\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_column][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
Presentaci\u00f3n<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Las siguientes presentaciones se han a\u00f1adido con la esperanza de que ayuden a pacientes, familias y m\u00e9dicos interesados en aprender m\u00e1s sobre ECD<\/a>. La ECDGA agradece los esfuerzos y contribuciones realizados por la comunidad m\u00e9dica para mejorar la atenci\u00f3n a los pacientes con ECD.[\/et_pb_text][et_pb_text module_class=\u00bbevent-table\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n\n
![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/01\/2017-Patient-Caregiver-Attendees-Small-e1516487954105-300x200.jpg\")
<\/a>Location:<\/strong> New York, NY\r\n\r\nThank you to the 150 participants for making this year\u2019s ECD Patient Gathering a huge success! Patients, family members, nurses, research teams and numerous physicians attended the 2017 Patient & Family Gathering held in New York. Attendees were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological affects of living with ECD. Please see the event materials below for more information.\r\n\r\nPresentation Slides<\/strong>\r\n\r\nThe 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.\r\n\r\n[table id=33 \/]\r\n\r\nReception Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on October 26, 2017 in New York, NY. Thank you to all participants for attending and engaging with the community. Please join us again on November 15, 2018 in Orlando!\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"37654,37666,37678,37690,37702,37714,37726,37738,37750,37762,37774,37786,37798,37810,37822,37834,37846,37858,37870,37882,37894,37906,37918,37930,37942,37954,37966,37978,37990,38002,38014,38026,38038,38050,38062,38074,38086,38098,38110,38122,38134,38146,38158,38170,38182,38194,38206,38218,38230,38242,38254,38266,38278,38290,38302,38314,38326,38338,38350,38362,38374,38386,38398,38410,38422,38434,38446,38458,38470,38482,38494,38506,38518,38530,38542,38554,38566,38578,38590,38602,38614,38626,38638,38650,38662,38674,38686,38698,38710,38722,38734,38746,38758,38770,38782,38794,38806\"]\r\n\r\nPatient Meeting Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering meeting on October 27, 2017 in New York, NY. Thank you to all attendees for participating during the meeting and social times, allowing for great support and connections within this community. Please join us again on November 15, 2018 in Orlando!\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"38818,38830,38842,38854,38866,38878,38890,38902,38914,38926,38938,38950,38962,38974,38986,38998,39010,39022,39034,39046,39058,39070,39082,39094,39106,39118,39130,39142,39154,39166,39178,39190,39202,39214,39226,39238,39250,39262,39274,39286,39298,39310,39322,39334,39346,39358,39370,39382,39394,39406,39418,39430,39442,39454,39466,39478,39490,39502,39514\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4860],"tags":[],"class_list":["post-102319","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-reunion-de-pacientes-y-familiares"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102319","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=102319"}],"version-history":[{"count":39,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102319\/revisions"}],"predecessor-version":[{"id":173887,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102319\/revisions\/173887"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/173156"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=102319"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=102319"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=102319"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}