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]\u00a1Gracias a los 150 participantes por hacer que la Reuni\u00f3n de Pacientes ECD de este a\u00f1o fuera un gran \u00e9xito! Pacientes, familiares, enfermeras, equipos de investigaci\u00f3n y numerosos m\u00e9dicos asistieron a la Reuni\u00f3n de Pacientes y Familiares 2017 celebrada en Nueva York. Los asistentes se pusieron al d\u00eda sobre las \u00faltimas investigaciones, tratamientos y t\u00e9cnicas de gesti\u00f3n de los cuidados, incluidos los efectos psicol\u00f3gicos de vivir con ECD. Para m\u00e1s informaci\u00f3n, consulta los materiales del evento que figuran a continuaci\u00f3n.[\/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=\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":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"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":48,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102319\/revisions"}],"predecessor-version":[{"id":135249,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102319\/revisions\/135249"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/135158"}],"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}]}}