BEGIN:VCALENDAR VERSION:2.0 PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN CALSCALE:GREGORIAN METHOD:PUBLISH X-ORIGINAL-URL:https://www.erdheim-chester.org/zh-hant/ X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance REFRESH-INTERVAL;VALUE=DURATION:PT1H X-Robots-Tag:noindex X-PUBLISHED-TTL:PT1H BEGIN:VTIMEZONE TZID:America/Chicago BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20120311T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20121104T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20130310T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20131103T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20140309T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20141102T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20150308T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20151101T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20160313T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20161106T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20170312T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20171105T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20180311T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20181104T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20190310T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20191103T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20200308T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20201101T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20210314T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20211107T070000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0600 TZOFFSETTO:-0500 TZNAME:CDT DTSTART:20220313T080000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0500 TZOFFSETTO:-0600 TZNAME:CST DTSTART:20221106T070000 END:STANDARD END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/Chicago:20210624T120000 DTEND;TZID=America/Chicago:20210624T130000 DTSTAMP:20260606T063051 CREATED:20250826T130035Z LAST-MODIFIED:20250910T094459Z UID:10000750-1624536000-1624539600@www.erdheim-chester.org SUMMARY:Histio 患者需求：關注眼睛和視力 DESCRIPTION:在本次網路研討會中，紀念斯隆凱特琳癌症中心 （MSK） 的醫生將説明您進一步瞭解當前的眼部受累如何影響日常生活，以及如何獲得更好的結果和結果。對於那些目前沒有任何眼部受累的患者來說，這也會引起興趣，但他們即將到來的治療可能會引起眼睛問題。\n錄製於 2021 年 2 月 URL:https://www.erdheim-chester.org/zh-hant/event/histio-%e6%82%a3%e8%80%85%e9%9c%80%e6%b1%82%ef%bc%9a%e9%97%9c%e6%b3%a8%e7%9c%bc%e7%9d%9b%e5%92%8c%e8%a6%96%e5%8a%9b/ CATEGORIES:網路研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Histio-Patient-Needs-A-Focus-on-the-Eyes-and-Vision.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20210525 DTEND;VALUE=DATE:20210527 DTSTAMP:20260606T063051 CREATED:20210402T041036Z LAST-MODIFIED:20250612T233018Z UID:10000177-1621983600-1622069999@www.erdheim-chester.org SUMMARY:第8屆 ECD 醫學研討會 DESCRIPTION:2021 年度 ECD 醫學研討會\n虛擬研討會\n感謝您參加今年的虛擬研討會！以下是本次會議的清單，包括議程、可列印的議程、演講者簡介、摘要和演示幻燈片。會議結束後，將在此處添加錄音並通過電子郵件發送給出席者。 2021 年虛擬活動議程 醫學研討會計劃 2021 ECD 虛擬醫學研討會錄音 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac8%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e7%a0%94%e8%a8%8e%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2021/04/8th-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20200701T120000 DTEND;TZID=America/Chicago:20200701T130000 DTSTAMP:20260606T063051 CREATED:20250826T125837Z LAST-MODIFIED:20250910T093922Z UID:10000726-1593604800-1593608400@www.erdheim-chester.org SUMMARY:使用 ECD 共識建議：宣導您的健康 DESCRIPTION:舉辦了一場教育網路研討會，以解釋最新的 Erdheim-Chester 病 （ECD） 共識檔，並瞭解如何將其用於護理和付款人支援。會議後回答的問題發佈在這裡。\n錄製於 2020 年 6 月 URL:https://www.erdheim-chester.org/zh-hant/event/%e4%bd%bf%e7%94%a8-ecd-%e5%85%b1%e8%ad%98%e5%bb%ba%e8%ad%b0%ef%bc%9a%e5%ae%a3%e5%b0%8e%e6%82%a8%e7%9a%84%e5%81%a5%e5%ba%b7/ CATEGORIES:網路研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Using-ECD-Consensus-Recommendations-Advocating-for-your-health.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20190111T070000 DTEND;TZID=America/Chicago:20190112T160000 DTSTAMP:20260606T063051 CREATED:20190112T044502Z LAST-MODIFIED:20250930T005149Z UID:10000097-1547190000-1547308800@www.erdheim-chester.org SUMMARY:第七屆國際 ECD 和家庭聚會 DESCRIPTION:位置： Milan、義大利 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e4%b8%83%e5%b1%86%e5%9c%8b%e9%9a%9b-ecd-%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83/ CATEGORIES:ECD 患者和家庭聚會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2019/01/7th-annual-ECD-patient-and-family-gathering.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190110 DTEND;VALUE=DATE:20190112 DTSTAMP:20260606T063051 CREATED:20190402T040910Z LAST-MODIFIED:20250929T232822Z UID:10000162-1547161200-1547247599@www.erdheim-chester.org SUMMARY:第 7 屆 ECD 醫學年會 DESCRIPTION:位置： Milan、義大利 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac-7-%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e5%b9%b4%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/7th-annual-ECD-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180515 DTEND;VALUE=DATE:20180517 DTSTAMP:20260606T063051 CREATED:20180517T031728Z LAST-MODIFIED:20250930T004640Z UID:10000087-1526425200-1526511599@www.erdheim-chester.org SUMMARY:第六屆年度國際 ECD 和家庭聚會 DESCRIPTION:位置： 佛羅里達州奧蘭多 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e5%85%ad%e5%b1%86%e5%b9%b4%e5%ba%a6%e5%9c%8b%e9%9a%9b-ecd-%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83/ CATEGORIES:ECD 患者和家庭聚會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/6th-annual-ECD-patient-family-gathering.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180514 DTEND;VALUE=DATE:20180516 DTSTAMP:20260606T063052 CREATED:20180402T040640Z LAST-MODIFIED:20250929T231329Z UID:10000157-1526338800-1526425199@www.erdheim-chester.org SUMMARY:第 6 屆 ECD 醫學年會 DESCRIPTION:位置： 佛羅里達州奧蘭多 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac-6-%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e5%b9%b4%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/6th-annual-ECD-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20170426 DTEND;VALUE=DATE:20170428 DTSTAMP:20260606T063052 CREATED:20170428T031317Z LAST-MODIFIED:20250402T031317Z UID:10000332-1493247600-1493333999@www.erdheim-chester.org SUMMARY:第五屆年度國際 ECD 和家庭聚會 DESCRIPTION:位置： 紐約州紐約市 \n感謝 150 名參與者使今年的 ECD 患者聚會取得巨大成功！患者、家庭成員、護士、研究團隊和眾多醫生參加了在紐約舉行的2017年患者和家庭聚會。出席者瞭解了最新的研究、治療和護理管理技術，包括與 ECD 共存的心理影響。有關更多資訊，請參閱下面的活動材料。 \n演示幻燈片 \n添加了以下演示文稿，希望它們能幫助有興趣瞭解更多關於 ECD的患者、家庭和醫生。 ECDGA 感謝醫學界為改善對 ECD 患者的護理所做的努力和貢獻。 \n\n\n\n\n PresenterSlidesContact Information\n\n\n\n\n Craig Blinderman\, MD\, MA\, FAAHPMPain management in Erdheim-Chester DiseaseColumbia University Medical Center/New York Presbyterian Hospital\nE-mail: cdb21@columbia.edu | Telephone: 1.212.305.3071\n\n\n Eli L. Diamond\, MDECD and the Brain Slides coming soonMemorial Sloan-Kettering Cancer Center\nE-mail: diamone1@mskcc.org | Telephone: 1.212.639.5122\n\n\n Mary Elizabeth Davis\, RN\, MSN\, AOCNS and Allison Hyde\, RN\, BSNDemystifying the Clinical Trial\nSee also printable ECD Studies & Trials GuideMemorial Sloan Kettering Cancer Center Davis\nE-mail: davism@mskcc.org | Telephone: 1. 646.942.0189Hyde\nTelephone: 1.916.505.1517\n\n\n Ronald Go\, MDECD Treatment OptionsMayo Clinic\nE-mail: go.ronald@mayo.edu | Telephone: 1.507.284.5362\n\n\n Mark Heaney\, MDAn Overview of ECDColumbia University Medical Center\nE-mail: Mlh2192@cumc.columbia.edu | Telephone: 1.646.317.5077\n\n\n Filip Janku\, MD\, PhDECD and Clinical Trials\nSee also printable ECD Studies & Trials GuideThe University of Texas MD Anderson Cancer Center\nE-mail: fjanku@mdanderson.org | Telephone: 1.713.563.0803\n\n\n Meenal Kheterpal\, MDSkin Care Pearls ECD ManagementMemorial Sloan Kettering Cancer Center\nTelephone: 1.914.367.7295\n\n\n Andy J. Roth\, MDPsychological Effects on the Chronically Ill and Their FamiliesMemorial Sloan Kettering Cancer Center\nTelephone: 1.646.888.0024\n\n\n\n\n接待照片 \n以下照片是在2017年10月26日在紐約州紐約市舉行的ECD患者和ECD家庭聚會招待會上拍攝的。感謝所有參與者的參與並與社區互動。請於 2018 年 11 月 15 日在奧蘭多再次加入我們！ \n\n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n患者會議照片 \n以下照片是在2017年10月27日在紐約州紐約市舉行的 ECD 和家庭聚會期間拍攝的。感謝所有出席者在會議和社交期間的參與，讓這個社區內提供了極大的支持和聯繫。請於 2018 年 11 月 15 日在奧蘭多再次加入我們！ URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e4%ba%94%e5%b1%86%e5%b9%b4%e5%ba%a6%e5%9c%8b%e9%9a%9b-ecd-%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83/ CATEGORIES:ECD 患者和家庭聚會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/5th-annual-ECD-patient-family-gathering.png END:VEVENT BEGIN:VEVENT DTSTART;TZID=America/Chicago:20170425T070000 DTEND;TZID=America/Chicago:20170426T160000 DTSTAMP:20260606T063052 CREATED:20170402T040456Z LAST-MODIFIED:20250924T174957Z UID:10000147-1493103600-1493222400@www.erdheim-chester.org SUMMARY:第 5 屆 ECD 醫學研討會 DESCRIPTION:位置： 紐約州紐約市 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac-5-%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e7%a0%94%e8%a8%8e%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/5th-annual-ECD-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20160315 DTEND;VALUE=DATE:20160317 DTSTAMP:20260606T063052 CREATED:20160402T040314Z LAST-MODIFIED:20250929T231621Z UID:10000137-1458082800-1458169199@www.erdheim-chester.org SUMMARY:第 4 屆 ECD 醫學年會 DESCRIPTION:位置： 法國 巴黎 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac-4-%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e5%b9%b4%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/4th-annual-ECD-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20160315 DTEND;VALUE=DATE:20160317 DTSTAMP:20260606T063052 CREATED:20160317T031203Z LAST-MODIFIED:20250930T002341Z UID:10000354-1458082800-1458169199@www.erdheim-chester.org SUMMARY:第四屆國際 ECD 和家庭聚會 DESCRIPTION:位置： 法國 巴黎 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e5%9b%9b%e5%b1%86%e5%9c%8b%e9%9a%9b-ecd-%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83/ CATEGORIES:ECD 患者和家庭聚會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/4th-intl-ECD-family-gathering.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20150417 DTEND;VALUE=DATE:20150419 DTSTAMP:20260606T063052 CREATED:20150402T040141Z LAST-MODIFIED:20250929T231721Z UID:10000122-1429311600-1429397999@www.erdheim-chester.org SUMMARY:第 3 屆 ECD 醫學年會 DESCRIPTION:位置： 德克薩斯州休斯頓 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac-3-%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e5%b9%b4%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/3rd-annual-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20140317 DTEND;VALUE=DATE:20140319 DTSTAMP:20260606T063052 CREATED:20140402T035939Z LAST-MODIFIED:20250929T232515Z UID:10000117-1395097200-1395183599@www.erdheim-chester.org SUMMARY:第二屆 ECD 醫學年會 DESCRIPTION:位置： 馬里蘭州貝塞斯達 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e4%ba%8c%e5%b1%86-ecd-%e9%86%ab%e5%ad%b8%e5%b9%b4%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/2nd-annual-medical-symposium.png END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20130530 DTEND;VALUE=DATE:20130601 DTSTAMP:20260606T063052 CREATED:20130402T035405Z LAST-MODIFIED:20250929T232634Z UID:10000107-1369954800-1370041199@www.erdheim-chester.org SUMMARY:第一屆國際 ECD 研討會 DESCRIPTION:位置： 加利福尼亞州聖地亞哥 URL:https://www.erdheim-chester.org/zh-hant/event/%e7%ac%ac%e4%b8%80%e5%b1%86%e5%9c%8b%e9%9a%9b-ecd-%e7%a0%94%e8%a8%8e%e6%9c%83/ CATEGORIES:ECD 醫學研討會 ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/04/Ist-Intl.-ECD-medical-symposium-1.png END:VEVENT END:VCALENDAR