{"id":102321,"date":"2017-04-27T19:09:39","date_gmt":"2017-04-28T00:09:39","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/5o-encontro-internacional-anual-de-pacientes-e-familiares-com-dpi-nova-york-ny\/"},"modified":"2026-05-29T12:00:32","modified_gmt":"2026-05-29T17:00:32","slug":"5o-encontro-internacional-anual-de-pacientes-e-familiares-com-dpi-nova-york-ny","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt-br\/5o-encontro-internacional-anual-de-pacientes-e-familiares-com-dpi-nova-york-ny\/","title":{"rendered":"5\u00ba Encontro Anual de Pacientes e Familiares de ECD Nova York, NY"},"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=”{}”][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=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][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=”{}”][\/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|0px|0px|false|true” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_text=”Eli Diamond, MD & Mark Heaney, 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” custom_padding=”|0px||20px|false|false” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_text=”Memorial Sloan Kettering Cancer Center (MSKCC)” _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=”{}”][\/et_pb_button][et_pb_button button_text=”Nova York, NY” _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=”{}”][\/et_pb_button][et_pb_button button_text=”27 de outubro de 2017″ _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=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row disabled_on=”on|on|on” _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” disabled=”on” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/01\/2017-Patient-Caregiver-Attendees-Small-e1516487954105.jpg” title_text=”2017-Patient-Caregiver-Attendees-Small-e1516487954105″ align=”center” force_fullwidth=”on” module_class=”event-image” _builder_version=”4.27.6″ _module_preset=”default” border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][\/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=”{}”]<\/p>\n

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Foto de Grupo do Encontro de Pacientes e Familiares de Nova 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

Resumo do Encontro de Pacientes e Familiares<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Obrigado aos 150 participantes por fazerem do Encontro de Pacientes ECD deste ano um enorme sucesso! Pacientes, familiares, enfermeiros, equipes de pesquisa e v\u00e1rios m\u00e9dicos participaram do Encontro de Pacientes e Familiares de 2017, realizado em Nova York. Os participantes foram atualizados sobre as mais recentes pesquisas, tratamentos e t\u00e9cnicas de gerenciamento de cuidados, incluindo os efeitos psicol\u00f3gicos de viver com ECD. Para obter mais informa\u00e7\u00f5es, consulte os materiais do evento abaixo.[\/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

Apresenta\u00e7\u00e3o<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]As seguintes apresenta\u00e7\u00f5es foram adicionadas na esperan\u00e7a de que ajudem pacientes, fam\u00edlias e m\u00e9dicos interessados em aprender mais sobre a ECD<\/a>. A ECDGA agradece os esfor\u00e7os e contribui\u00e7\u00f5es feitos pela comunidade m\u00e9dica para melhorar o atendimento aos pacientes com 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\n\n\n\t\n\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Presenter<\/th>Slides<\/th>Contact Information<\/th>\n<\/tr>\n<\/thead>\n
Craig Blinderman, MD, MA, FAAHPM<\/td>Pain management in Erdheim-Chester Disease<\/a><\/td>Columbia University Medical Center\/New York Presbyterian Hospital
\nE-mail: cdb21@columbia.edu | Telephone: 1.212.305.3071<\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain Slides coming soon<\/td>Memorial Sloan-Kettering Cancer Center
\nE-mail: diamone1@mskcc.org | Telephone: 1.212.639.5122<\/td>\n<\/tr>\n
Mary Elizabeth Davis, RN, MSN, AOCNS and Allison Hyde, RN, BSN<\/td>Demystifying the Clinical Trial<\/a>
\nSee also printable ECD Studies & Trials Guide<\/a><\/td>		Memorial Sloan Kettering Cancer Center Davis
\nE-mail: davism@mskcc.org | Telephone: 1. 646.942.0189Hyde
\nTelephone: 1.916.505.1517<\/td>\n<\/tr>\n
Ronald Go, MD<\/td>ECD Treatment Options<\/a><\/td>Mayo Clinic
\nE-mail: go.ronald@mayo.edu | Telephone: 1.507.284.5362<\/td>\n<\/tr>\n
Mark Heaney, MD<\/td>An Overview of ECD<\/a><\/td>Columbia University Medical Center
\nE-mail: Mlh2192@cumc.columbia.edu | Telephone: 1.646.317.5077<\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>ECD and Clinical Trials<\/a>
\nSee also printable ECD Studies & Trials Guide<\/a><\/td>		The University of Texas MD Anderson Cancer Center
\nE-mail: fjanku@mdanderson.org | Telephone: 1.713.563.0803<\/td>\n<\/tr>\n
Meenal Kheterpal, MD<\/td>Skin Care Pearls ECD Management<\/a><\/td>Memorial Sloan Kettering Cancer Center
\nTelephone: 1.914.367.7295<\/td>\n<\/tr>\n
Andy J. Roth, MD<\/td>Psychological Effects on the Chronically Ill and Their Families<\/a><\/td>Memorial Sloan Kettering Cancer Center
\nTelephone: 1.646.888.0024<\/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=”{}”][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

Fotografias<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||20px||false|false” global_colors_info=”{}”]<\/p>\n

Fotos da recep\u00e7\u00e3o<\/h3>\n

As fotos a seguir foram tiradas durante a Recep\u00e7\u00e3o do Encontro de Pacientes e Fam\u00edlias com profissionais m\u00e9dicos e fam\u00edlias com ECD em 26 de outubro de 2017, em Nova York, NY. Obrigado a todos os participantes por comparecerem e se envolverem com a comunidade. Por favor, junte-se a n\u00f3s<\/a> novamente em 15 de novembro de 2018, em Orlando![\/et_pb_text][et_pb_gallery gallery_ids=”37664,37676,37688,37700,37712,37724,37736,37748,37760,37772,37784,37796,37808,37820,37832,37844,37856,37868,37880,37892,37904,37916,37928,37940,37952,37964,37976,37988,38000,38012,38024,38036,38048,38060,38072,38084,38096,38108,38120,38132,38144,38156,38168,38180,38192,38204,38216,38228,38240,38252,38264,38276,38288,38300,38312,38324,38336,38348,38360,38372,38384,38396,38408,38420,38432,38444,38456,38468,38480,38492,38504,38516,38528,38540,38552,38564,38576,38588,38600,38612,38624,38636,38648,38660,38672,38684,38696,38708,38720,38732,38744,38756,38768,38780,38792,38804,38816″ 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=”5.1.1″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” global_colors_info=”{}”][\/et_pb_gallery][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||20px||false|false” global_colors_info=”{}”]<\/p>\n

Fotos da reuni\u00e3o de pacientes<\/h3>\n

As fotos a seguir foram tiradas durante a reuni\u00e3o do ECD Patient & Family Gathering em 27 de outubro de 2017 em Nova York, NY. Obrigado a todos os participantes por participarem da reuni\u00e3o e dos momentos sociais, o que permitiu um grande apoio e conex\u00f5es dentro dessa comunidade. Junte-se a n\u00f3s novamente em 15 de novembro de 2018, em Orlando![\/et_pb_text][et_pb_gallery gallery_ids=”38828,38840,38852,38864,38876,38888,38900,38912,38924,38936,38948,38960,38972,38984,38996,39008,39020,39032,39044,39056,39068,39080,39092,39104,39116,39128,39140,39152,39164,39176,39188,39200,39212,39224,39236,39248,39260,39272,39284,39296,39308,39320,39332,39344,39356,39368,39380,39392,39404,39416,39428,39440,39452,39464,39476,39488,39500,39512,39524″ 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=”5.1.1″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” global_colors_info=”{}”][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Foto de Grupo do Encontro de Pacientes e Familiares de Nova York 2017 Resumo do Encontro de Pacientes e FamiliaresObrigado aos 150 participantes por fazerem do Encontro de Pacientes ECD […]<\/p>\n","protected":false},"author":20,"featured_media":135156,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"\"<\/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":[4861],"tags":[],"class_list":["post-102321","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-reuniao-de-pacientes-e-familiares"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts\/102321","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/comments?post=102321"}],"version-history":[{"count":53,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts\/102321\/revisions"}],"predecessor-version":[{"id":135248,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/posts\/102321\/revisions\/135248"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/media\/135156"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/media?parent=102321"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/categories?post=102321"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/tags?post=102321"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}