{"id":102316,"date":"2017-04-27T19:09:39","date_gmt":"2017-04-28T00:09:39","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/5e-reunion-internationale-annuelle-des-patients-et-des-familles-de-lecd-new-york-ny\/"},"modified":"2026-05-29T12:00:02","modified_gmt":"2026-05-29T17:00:02","slug":"5e-reunion-internationale-annuelle-des-patients-et-des-familles-de-lecd-new-york-ny","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/5e-reunion-internationale-annuelle-des-patients-et-des-familles-de-lecd-new-york-ny\/","title":{"rendered":"5e rassemblement annuel des patients et familles de l\u2019ECD, New York, NY"},"content":{"rendered":"

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Heaney, MD\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||fa||400″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb custom_padding=\u00a0\u00bb|0px||20px|false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_text=\u00a0\u00bbMemorial Sloan Kettering Cancer Center (MSKCC)\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ 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Photo de groupe de la rencontre des patients et des familles \u00e0 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=\u00a0\u00bb1″ disabled_on=\u00a0\u00bboff|off|off\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb10px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb width__hover_enabled=\u00a0\u00bboff|desktop\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text disabled_on=\u00a0\u00bboff|off|off\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

R\u00e9sum\u00e9 de la r\u00e9union des patients et des familles<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]Merci aux 150 participants d’avoir fait du ECD Patient Gathering de cette ann\u00e9e un \u00e9norme succ\u00e8s ! Des patients, des membres de leur famille, des infirmi\u00e8res, des \u00e9quipes de recherche et de nombreux m\u00e9decins ont particip\u00e9 \u00e0 l \u00ab \u00e9dition 2017 du Patient & Family Gathering qui s’est tenue \u00e0 New York. Les participants ont \u00e9t\u00e9 inform\u00e9s des derni\u00e8res recherches, des traitements et des techniques de gestion des soins, y compris des effets psychologiques de la vie avec ECD. Veuillez consulter les documents relatifs \u00e0 l \u00bb \u00e9v\u00e9nement ci-dessous pour plus d’informations.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Pr\u00e9sentation<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]Les pr\u00e9sentations suivantes ont \u00e9t\u00e9 ajout\u00e9es dans l\u2019espoir qu\u2019elles aideront les patients, les familles et les m\u00e9decins souhaitant en savoir plus sur l\u2019ECD<\/a>. L\u2019ECDGA est reconnaissante des efforts et des contributions de la communaut\u00e9 m\u00e9dicale pour am\u00e9liorer les soins aux patients atteints d\u2019ECD.[\/et_pb_text][et_pb_text module_class=\u00a0\u00bbevent-table\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/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=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photographies<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb20px||20px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photos de la r\u00e9ception<\/h3>\n

Les photos suivantes ont \u00e9t\u00e9 prises lors de la r\u00e9ception du rassemblement des patients et familles atteints d\u2019ECD avec des professionnels de la sant\u00e9 et des familles concern\u00e9es par l\u2019ECD, le 26 octobre 2017 \u00e0 New York, NY. Merci \u00e0 tous les participants pour leur pr\u00e9sence et leur engagement envers la communaut\u00e9. Veuillez nous rejoindre<\/a> \u00e0 nouveau le 15 novembre 2018 \u00e0 Orlando ![\/et_pb_text][et_pb_gallery gallery_ids=\u00a0\u00bb37657,37669,37681,37693,37705,37717,37729,37741,37753,37765,37777,37789,37801,37813,37825,37837,37849,37861,37873,37885,37897,37909,37921,37933,37945,37957,37969,37981,37993,38005,38017,38029,38041,38053,38065,38077,38089,38101,38113,38125,38137,38149,38161,38173,38185,38197,38209,38221,38233,38245,38257,38269,38281,38293,38305,38317,38329,38341,38353,38365,38377,38389,38401,38413,38425,38437,38449,38461,38473,38485,38497,38509,38521,38533,38545,38557,38569,38581,38593,38605,38617,38629,38641,38653,38665,38677,38689,38701,38713,38725,38737,38749,38761,38773,38785,38797,38809″ posts_number=\u00a0\u00bb100″ orientation=\u00a0\u00bbportrait\u00a0\u00bb show_title_and_caption=\u00a0\u00bboff\u00a0\u00bb module_class=\u00a0\u00bbevent-gallery\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb db_images_per_row=\u00a0\u00bb5″ db_image_max_width=\u00a0\u00bb95%\u00a0\u00bb db_image_max_height=\u00a0\u00bb88px\u00a0\u00bb db_image_row_spacing=\u00a0\u00bb1%\u00a0\u00bb dbdb_version=\u00a0\u00bb5.1.1″ db_image_object_fit=\u00a0\u00bbcover\u00a0\u00bb border_radii_image=\u00a0\u00bbon|8px|8px|8px|8px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_gallery][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb20px||20px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photos de la r\u00e9union des patients<\/h3>\n

Les photos suivantes ont \u00e9t\u00e9 prises lors de la r\u00e9union de ECD Patient & Family Gathering le 27 octobre 2017 \u00e0 New York, NY. Merci \u00e0 tous les participants d’avoir particip\u00e9 \u00e0 la r\u00e9union et aux moments de convivialit\u00e9, ce qui a permis d’apporter un grand soutien et de tisser des liens au sein de cette communaut\u00e9. Rejoignez-nous le 15 novembre 2018 \u00e0 Orlando ![\/et_pb_text][et_pb_gallery gallery_ids=\u00a0\u00bb38821,38833,38845,38857,38869,38881,38893,38905,38917,38929,38941,38953,38965,38977,38989,39001,39013,39025,39037,39049,39061,39073,39085,39097,39109,39121,39133,39145,39157,39169,39181,39193,39205,39217,39229,39241,39253,39265,39277,39289,39301,39313,39325,39337,39349,39361,39373,39385,39397,39409,39421,39433,39445,39457,39469,39481,39493,39505,39517″ posts_number=\u00a0\u00bb100″ orientation=\u00a0\u00bbportrait\u00a0\u00bb show_title_and_caption=\u00a0\u00bboff\u00a0\u00bb module_class=\u00a0\u00bbevent-gallery\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb db_images_per_row=\u00a0\u00bb5″ db_image_max_width=\u00a0\u00bb95%\u00a0\u00bb db_image_max_height=\u00a0\u00bb88px\u00a0\u00bb db_image_row_spacing=\u00a0\u00bb1%\u00a0\u00bb dbdb_version=\u00a0\u00bb5.1.1″ db_image_object_fit=\u00a0\u00bbcover\u00a0\u00bb border_radii_image=\u00a0\u00bbon|8px|8px|8px|8px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Photo de groupe de la rencontre des patients et des familles \u00e0 New York, 2017 R\u00e9sum\u00e9 de la r\u00e9union des patients et des famillesMerci aux 150 participants d’avoir fait du […]<\/p>\n","protected":false},"author":20,"featured_media":135142,"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":[4853],"tags":[],"class_list":["post-102316","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rassemblement-des-patients-et-des-familles"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102316","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=102316"}],"version-history":[{"count":56,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102316\/revisions"}],"predecessor-version":[{"id":135241,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102316\/revisions\/135241"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/135142"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=102316"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=102316"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=102316"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}