Gruppebilde fra pasient- og p\u00e5r\u00f8rendesamling i 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
Sammendrag fra pasient- og familiesamling<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]Takk til de 150 deltakerne som gjorde \u00e5rets ECD Patient Gathering til en stor suksess! Pasienter, familiemedlemmer, sykepleiere, forskerteam og en rekke leger deltok p\u00e5 2017 Patient & Family Gathering i New York. Deltakerne ble oppdatert p\u00e5 det siste innen forskning, behandling og pleieteknikker, inkludert de psykologiske konsekvensene av \u00e5 leve med ECD. Mer informasjon finner du i arrangementsmaterialet nedenfor.[\/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
Presentasjon<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]F\u00f8lgende presentasjoner er lagt til i h\u00e5p om at de vil hjelpe pasienter, familier og leger som er interessert i \u00e5 l\u00e6re mer om ECD<\/a>. ECDGA er takknemlig for innsatsen og bidragene fra det medisinske milj\u00f8et for \u00e5 forbedre omsorgen for ECD-pasienter.[\/et_pb_text][et_pb_text module_class=»event-table» _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]<\/p>\n\n
| 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 Fotografier<\/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 Bilder fra mottakelsen<\/h3>\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":[4862],"tags":[],"class_list":["post-102323","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-pasient-og-familiesamlinger"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102323","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=102323"}],"version-history":[{"count":51,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102323\/revisions"}],"predecessor-version":[{"id":135247,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102323\/revisions\/135247"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/135154"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=102323"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=102323"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=102323"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}