Foto di gruppo dell’incontro per pazienti e famiglie a New 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=”1″ disabled_on=”off|off|off” _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”0px||||false|false” locked=”off” global_colors_info=”{}”][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”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text disabled_on=”off|off|off” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||15px||false|false” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}”]<\/p>\n
Riepilogo dell’Incontro per Pazienti e Famiglie<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Grazie ai 150 partecipanti che hanno reso il Patient Gathering di quest’anno ECD un grande successo! Pazienti, familiari, infermieri, team di ricerca e numerosi medici hanno partecipato al Patient & Family Gathering 2017 tenutosi a New York. I partecipanti sono stati aggiornati sulle ultime ricerche, sui trattamenti e sulle tecniche di gestione dell’assistenza, compresi gli effetti psicologici della convivenza con ECD. Per maggiori informazioni, consulta il materiale dell’evento qui sotto.[\/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=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][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=”{}”]<\/p>\n
Presentazione<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Le seguenti presentazioni sono state aggiunte nella speranza che possano aiutare i pazienti, le famiglie e i medici interessati a saperne di pi\u00f9 sull’ECD<\/a>. L’ECDGA \u00e8 grata per gli sforzi e i contributi della comunit\u00e0 medica volti a migliorare l’assistenza ai pazienti affetti da ECD.[\/et_pb_text][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/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":[4852],"tags":[],"class_list":["post-102324","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-riunione-di-pazienti-e-familiari"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102324","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=102324"}],"version-history":[{"count":55,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102324\/revisions"}],"predecessor-version":[{"id":135246,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102324\/revisions\/135246"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/135152"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=102324"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=102324"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=102324"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}