{"id":4281,"date":"2019-03-10T12:53:21","date_gmt":"2019-03-10T12:53:21","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?page_id=4281"},"modified":"2025-09-29T21:56:44","modified_gmt":"2025-09-30T02:56:44","slug":"tidligere-arrangementer-3","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/nb\/past-events\/","title":{"rendered":"Tidligere arrangementer"},"content":{"rendered":"

[et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_image=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png” background_position=”bottom_center” background_vertical_offset=”20%” custom_padding=”0px||0px||true|false” background_last_edited=”on|desktop” background_position_tablet=”bottom_right” background_position_phone=”center_right” global_module=”28071″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_dmb_breadcrumbs _builder_version=”4.27.4″ _module_preset=”default” body_text_color=”#FFFFFF” body_font_size=”12px” link_text_color=”#35A4BB” custom_margin=”||5px||false|false” custom_padding=”||0px||false|false” body_font_size_tablet=”12px” body_font_size_phone=”10px” body_font_size_last_edited=”on|desktop” global_colors_info=”{}”][\/et_pb_dmb_breadcrumbs][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.4″ _dynamic_attributes=”title” _module_preset=”default” title_font=”–et_global_heading_font|300|||||||” title_text_color=”#FFFFFF” title_font_size=”40px” custom_margin=”||3px|||” title_font_size_tablet=”” title_font_size_phone=”25px” title_font_size_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_heading][et_pb_button button_url=”\/contact-us\/” button_text=”Contact Us” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_size=”15px” button_text_color=”#C02E43″ button_bg_color=”rgba(10,22,64,0.53)” button_border_width=”0px” button_icon=”||divi||400″ button_icon_color=”#C02E43″ button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}” filter_opacity__hover_enabled=”on|hover” filter_opacity__hover=”70%”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”section” _builder_version=”4.27.4″ global_colors_info=”{}”][et_pb_row admin_label=”row” _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

Annual Patient & Family Gathering History<\/h2>\n

Part of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life.\u00a0 The purpose of the Patient and Family Gathering (PFG) is to unite international patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester Disease.<\/p>\n

The PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical\u00a0professionals who have experience in caring for ECD patients and who are doing research in the field.\u00a0 The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.<\/p>\n

Looking back at previous years’ videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions.\u00a0 (All ECDGA videos can also be found on our YouTube Channel<\/a>.)<\/p>\n

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[et_pb_dmb_breadcrumbs _builder_version=”4.27.4″ _module_preset=”default” body_text_color=”#FFFFFF” body_font_size=”12px” link_text_color=”#35A4BB” custom_margin=”||5px||false|false” custom_padding=”||0px||false|false” body_font_size_tablet=”12px” body_font_size_phone=”10px” body_font_size_last_edited=”on|desktop” global_colors_info=”{}”][\/et_pb_dmb_breadcrumbs]Annual Patient & Family Gathering History Part of the ECD Global Alliance’s mission is to educate and support patients […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"

Annual Patient & Family Gathering History<\/h2>\r\nPart of the ECD Global Alliance's mission is to educate and support patients with the information they need to advocate for their health and quality of life.\u00a0 The purpose of the Patient and Family Gathering (PFG) is to unite international patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester Disease.\r\n\r\nThe PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical\u00a0professionals who have experience in caring for ECD patients and who are doing research in the field.\u00a0 The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.\r\n\r\nLooking back at previous years' videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions.\u00a0 (All ECDGA videos can also be found on our YouTube Channel<\/a>.)\r\n\r\n
\r\n\r\n

2023 \"\"International ECD Patient & Family Gathering<\/h4>\r\n

April 28, 2023| Rochester, MN<\/h4>\r\n

<\/h4>\r\n

<\/h4>\r\n[accordion autoclose=false clicktoclose=true tag=h4][accordion-item title=\"Presentations\"]\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nPresentation Slides<\/b><\/td>\r\nPresentation Videos<\/strong><\/td>\r\n<\/tr>\r\n
Ronald Go, MD\r\nGuarav Goyal, MD<\/td>\r\n<\/td>\r\nWelcome<\/a><\/td>\r\n<\/tr>\r\n
Brewer, Kathy, Founder, ECDGA<\/td>\r\nECDGA Successes<\/a><\/td>\r\nECDGA Successes<\/a><\/td>\r\n<\/tr>\r\n
Hendrie, Paul, MD, Board Member<\/td>\r\nFocus on the Future<\/a><\/td>\r\nFocus on the Future<\/a><\/td>\r\n<\/tr>\r\n
Jacobsen, Eric, MD<\/td>\r\nErdheim-Chester Disease: Overview of Biology, Clinical Presentation, and Management<\/a><\/td>\r\nErdheim-Chester Disease: What Do We Know a Century Later<\/a><\/td>\r\n<\/tr>\r\n
Abeykoon, Jithma, MD<\/td>\r\nPrescriptions for a Rare Disease. Is There a Cure?<\/a><\/td>\r\nPrescriptions for a Rare Disease Video<\/a><\/td>\r\n<\/tr>\r\n
Diamond, Eli, MD<\/td>\r\nA Balancing Act: Treating Disease and Side Effects<\/a><\/td>\r\nTreating the Disease and the Side Effects: A Balancing Act<\/a><\/td>\r\n<\/tr>\r\n
Tobin, Oliver, MD<\/td>\r\nIt\u2019s Not All in the Head: ECD and the Brain<\/a><\/td>\r\nIt\u2019s Not All in the Head: ECD and the Brain<\/a><\/td>\r\n<\/tr>\r\n
Shekhar, Skand, MD<\/td>\r\nHormonal Woes \u2013 Finding the Right Balance<\/a><\/td>\r\nHormonal Woes Finding the Right Balance<\/a><\/td>\r\n<\/tr>\r\n
D\u2019Andre, Stacy, MD<\/td>\r\nIntegrative Oncology<\/a><\/td>\r\nIntegrative Oncology<\/a><\/td>\r\n<\/tr>\r\n
O\u2019Brien, Kevin, NP<\/td>\r\nDepression and Anxiety in Serious Chronic Illness<\/a><\/td>\r\nDepression and Anxiety in Serious Chronic Illness: Diagnosis and Management<\/a><\/td>\r\n<\/tr>\r\n
Nielsen, Alice<\/td>\r\n<\/td>\r\nAlice Nielsen \u2013 Patient Story<\/a><\/td>\r\n<\/tr>\r\n
Atnip, Barry<\/td>\r\n<\/td>\r\nBarry Atnip \u2013 Patient Story<\/a><\/td>\r\n<\/tr>\r\n
Abeykoon, Jithma, MD\r\nDiamond, Eli, MD\r\nGoyal, Guarav, MD\r\nHendrie, Paul, MD<\/td>\r\n<\/td>\r\nQuestions & Answers with the Experts<\/a><\/td>\r\n<\/tr>\r\n
Young, Angela, LSW\r\nBlackmer, Emily, MSW\r\nBargfrede, Melissa, MBA<\/td>\r\nPatient Support Panel Discussion<\/a><\/td>\r\nCancer Patient Navigator, Social Worker, and Financial Counselor Panel<\/a><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n \r\n\r\n \r\n

2022 Regional Patient & Family Gatherings<\/h4>\r\nFind recordings on our YouTube channel in our Regional Gathering Playlist<\/a>.\r\n\r\n\r\n\r\n
\r\n

May 23, 2022\u00a0 \u2022\u00a0 Birmingham, AL\r\n\"\"<\/a><\/p>\r\n<\/td>\r\n

August 12, 2022\u00a0 \u2022\u00a0 La Jolla, CA\"\"<\/td>\r\n\r\n

October 7, 2022 \u00a0\u2022\u00a0 Cincinnati, OH\"\"<\/a><\/p>\r\n<\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n \r\n\r\n \r\n\r\n \r\n

\"\"<\/a><\/h4>\r\n

7th Annual International\u00a0ECD\u00a0Patient & Family Gathering<\/h4>\r\n

July 12, 2019 | Milan, Italy<\/h4>\r\nThe event held in Europe allowed for the ECDGA to reach more patients internationally with information pertinent to their ongoing care and support from the community. Attendees came from eight countries to hear from the experts in this field and meet others closer to home for the first time ever.\u00a0 Sixty-eight attendees participated in the event.\r\n\r\n\"Fantastic contact with other patients<\/em>.\" - Susie Smythe, Caregiver\r\n\"[The ECDGA] has helped me down the medicine path and with support.<\/em>\" - ECD Patient in Attendance\r\n\r\n \r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4][accordion-item title=\"Presentation Videos\"]\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nVideos\u00a0<\/strong>(Including Slides)<\/em><\/td>\r\nContact Information<\/strong><\/td>\r\n<\/tr>\r\n
Lorenzo Dagna, MD (Host)<\/em><\/td>\r\nWelcome to Italy<\/a><\/td>\r\nE-mail:\u00a0lorenzo.dagna@hsr.it<\/span><\/td>\r\n<\/tr>\r\n
Moderator: Ronald Go<\/td>\r\n\r\n

Ask the Experts!\u00a0<\/a><\/p>\r\n<\/td>\r\n

<\/td>\r\n<\/tr>\r\n
St\u00e9phane Barete, MD, PhD<\/td>\r\nECD and Skin Issues<\/a><\/td>\r\nE-mail: stephane.barete@aphp.fr<\/span><\/td>\r\n<\/tr>\r\n
Carine Courtillot, MD<\/td>\r\nEndocrine Manifestations in ECD<\/a><\/td>\r\nE-mail: carine.courtillot@aphp.fr<\/span><\/td>\r\n<\/tr>\r\n
Lorenzo Dagna, MD<\/td>\r\nECD & Drug Management<\/a><\/td>\r\nE-mail: lorenzo.dagna@hsr.it<\/span><\/td>\r\n<\/tr>\r\n
Eli L. Diamond, MD<\/td>\r\nECD and the Brain<\/a><\/td>\r\nE-mail: diamone1@mskcc.org<\/span><\/td>\r\n<\/tr>\r\n
Eli L. Diamond, MD<\/td>\r\nPatient-Reported Outcomes from the ECD Registry<\/a><\/td>\r\nE-mail: diamone1@mskcc.org<\/span><\/td>\r\n<\/tr>\r\n
\r\n

Julien Haroche, MD, PhD<\/p>\r\n<\/td>\r\n

\r\n

Organ Involvement in ECD<\/a><\/p>\r\n<\/td>\r\n

E-mail:\u00a0julien.haroche@aphp.fr<\/span><\/td>\r\n<\/tr>\r\n
Mark Heaney, MD, PhD<\/td>\r\nMutations in ECD<\/a><\/td>\r\nE-mail: Mlh2192@cumc.columbia.edu<\/span><\/td>\r\n<\/tr>\r\n
Filip Janku, MD, PhD<\/td>\r\nClinical Trials in ECD<\/a><\/td>\r\nE-mail: fjanku@mdanderson.org<\/span><\/td>\r\n<\/tr>\r\n
Roei Mazor, MD<\/td>\r\nDaily Care <\/a><\/td>\r\nE-mail: hematologyrec@assuta.co.il<\/span><\/td>\r\n<\/tr>\r\n
Augusto Vaglio, MD, PhD<\/td>\r\nRenal and Ureteral Involvement in ECD<\/a><\/td>\r\nE-mail: augusto.vaglio@virgilio.it<\/span><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n[\/accordion-item][accordion-item title=\"Reception & Meeting\u00a0Photos\"]\r\n\r\n[ngg src=\"galleries\" ids=\"29\" display=\"basic_thumbnail\" number_of_columns=\"2\"][\/accordion-item][\/accordion]\r\n

\"\"<\/a><\/h4>\r\n

6th Annual International ECD\u00a0Patient & Family Gathering\r\nNovember 16, 2018 | Orlando, FL<\/h4>\r\nA total of 109 patients, family members, and physicians, from eight countries attended the 2018 Patient & Family Gathering.\r\n\r\nAttendees learned about the drug trial process, how to manage multiple medications, how to care for yourself with nutrition and exercise, and more about care management. \u00a0Please see the event materials below for more on this successful event.\u00a0 Thank you to all participants!\r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4][accordion-item title=\"Presentation Slides\"]\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nVideos <\/strong><\/td>\r\nSlides<\/strong><\/td>\r\n<\/tr>\r\n
Eli L. Diamond, MD<\/td>\r\nECD Patient Registry<\/a><\/td>\r\nDiamond_ECD Registry<\/a><\/td>\r\n<\/tr>\r\n
Rebecca Donnenberg, RD CSO, LD\/N<\/td>\r\nNutrition and Erdheim-Chester<\/a><\/td>\r\nDonnenburg_Nurtition<\/a><\/td>\r\n<\/tr>\r\n
Ronald S. Go, MD<\/td>\r\nTreatment Options for ECD<\/a><\/td>\r\nGo_Treatment Options<\/a><\/td>\r\n<\/tr>\r\n
Fady Hannah-Shmouni, MD, DABIM, FRCPC<\/td>\r\nEndocrine Dysfunction in Erdheim-Chester<\/a><\/td>\r\nHannah-Shmouni _ Endocrine Dysfunction<\/a><\/td>\r\n<\/tr>\r\n
Eric Jacobsen, MD, PhD<\/td>\r\nThe Drug Trial Process<\/a><\/td>\r\nJacobsen_The Drug Process<\/a><\/td>\r\n<\/tr>\r\n
Cassie Nguyen, PharmD, BCOP<\/td>\r\nDrug Management for ECD<\/a><\/td>\r\nNguyen_Drug Management<\/a><\/td>\r\n<\/tr>\r\n
Collen Scordato, DPT, Cert. MDT (with Patricia Bobryk, MHS, PT, MSCS, ATP)<\/em><\/td>\r\nExercise and Physical Therapy<\/a><\/td>\r\nScordato_Exercise<\/a><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n[\/accordion-item][accordion-item title=\"Reception Photos\"]\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on November 15, 2018, at the Orlando Health Regional Medical Center.\u00a0 Thank you to all participants for attending and engaging with the community.\u00a0 You can find more photos on Facebook under the tag searches #ECDGA18 or directly on our ECDGA Facebook page<\/a>.\r\n\r\n[ngg src=\"galleries\" ids=\"25\" display=\"basic_thumbnail\"][\/accordion-item][accordion-item title=\"Patient Meeting\u00a0Photos\"]\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering meeting on November 16, 2018, the Orlando Health - Orlando Regional Medical Center.\u00a0 Thank you to all attendees for participating during the meeting and social times, allowing great support and connections within this community.\u00a0 You can find more photos on Facebook under the tag searches #ECDGA18 or directly on our ECDGA Facebook page<\/a>.\u00a0 Please join us again on July 12, 2019, in Milan, Italy!\r\n\r\n[ngg src=\"galleries\" ids=\"26\" display=\"basic_thumbnail\"][\/accordion-item][\/accordion]\r\n

\"2017-PFG-Attendees-Small\"<\/h4>\r\n

5th Annual International ECD\u00a0Patient & Family Gathering\r\nOctober 27, 2017 | New York, NY<\/h4>\r\nThank you to the 150 participants for making this year's 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. \u00a0Attendees were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological effects of living with ECD. \u00a0Please see the event materials below for more information.\r\n\r\n \r\n\r\n \r\n\r\n[accordion autoclose=false clicktoclose=true tag=h4][accordion-item title=\"Presentation Slides\"]\r\n\r\nThe following presentations have been added in hopes that\u00a0they 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 \r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nSlides<\/strong><\/td>\r\nContact Information<\/strong><\/td>\r\n<\/tr>\r\n
Craig Blinderman, MD, MA, FAAHPM<\/td>\r\nPain management in Erdheim-Chester Disease<\/a><\/td>\r\nColumbia University Medical Center\/New York Presbyterian Hospital\r\nE-mail: cdb21@columbia.edu<\/span> | Telephone: 1.212.305.3071<\/td>\r\n<\/tr>\r\n
Eli L. Diamond, MD<\/td>\r\nECD and the Brain\r\nSlides coming soon<\/em><\/td>\r\nMemorial Sloan-Kettering Cancer Center\r\nE-mail: diamone1@mskcc.org<\/span> | Telephone: 1.212.639.5122<\/td>\r\n<\/tr>\r\n
Mary Elizabeth Davis, RN, MSN, AOCNS\u00a0 and\r\nAllison Hyde, RN, BSN<\/td>\r\nDemystifying the Clinical Trial<\/a>\r\n\r\nSee also the printable ECD Studies & Trials Guide<\/a><\/td>\r\nMemorial Sloan Kettering Cancer Center\r\nDavis E-mail: davism@mskcc.org<\/span> | Telephone: 1. 646.942.0189\r\nHyde\u00a0Telephone: 1.916.505.1517<\/td>\r\n<\/tr>\r\n
Ronald Go, MD<\/td>\r\nECD Treatment Options<\/a><\/td>\r\nMayo Clinic\r\nE-mail: go.ronald@mayo.edu<\/span> | Telephone: 1.507.284.5362<\/td>\r\n<\/tr>\r\n
Mark Heaney, MD<\/td>\r\nAn Overview of ECD<\/a><\/td>\r\nColumbia University Medical Center\r\nE-mail: Mlh2192@cumc.columbia.edu<\/span> | Telephone: 1.646.317.5077<\/td>\r\n<\/tr>\r\n
Filip Janku, MD, PhD<\/td>\r\nECD and Clinical Trials<\/a>\r\n\r\nSee also the printable ECD Studies & Trials Guide<\/a><\/td>\r\nThe University of Texas MD Anderson Cancer Center\r\nE-mail: fjanku@mdanderson.org<\/span> | Telephone: 1.713.563.0803<\/td>\r\n<\/tr>\r\n
Meenal Kheterpal, MD<\/td>\r\nSkin Care Pearls ECD Management<\/a><\/td>\r\nMemorial Sloan Kettering Cancer Center\r\nTelephone: 1.914.367.7295<\/td>\r\n<\/tr>\r\n
Andy J. Roth, MD<\/td>\r\nPsychological Effects on the Chronically Ill and Their Families<\/a><\/td>\r\nMemorial Sloan Kettering Cancer Center\r\nTelephone: 1.646.888.0024<\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n[\/accordion-item][accordion-item title=\"Reception Photos\"]\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\"\"\r\n\r\n[\/accordion-item][accordion-item title=\"Patient Meeting\u00a0Photos\"]\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\"\"\r\n\r\n[\/accordion-item][\/accordion]\r\n\r\n \r\n

\"4th4th International ECD Patient & Family Gathering\r\nSeptember 16, 2016 | Paris, France<\/h4>\r\n

A total of 63\u00a0patients and family members, and numerous physicians, from 17 different countries attended the 2016 Patient & Family Gathering. \u00a0Attendees learned about current ECD studies and trials, how ECD can affect various organs of the body, pain management, scans, and care management. \u00a0Please see the event materials below for more on this successful event.<\/p>\r\n\r\n

<\/h2>\r\n

2016 Event Materials<\/h2>\r\n[accordion autoclose=false clicktoclose=true tag=h4]\r\n\r\n[accordion-item title=\"Presentations\"]\r\n\r\nThe following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France.\u00a0 Visit the ECD Global Alliance YouTube channel<\/a> for all published ECD-related videos.\r\n\r\n \r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nPresentation Slides<\/strong><\/td>\r\nPresentation Video<\/strong><\/td>\r\n<\/tr>\r\n
St\u00e9phane Barete, MD<\/em><\/td>\r\nECD Skin Issues<\/a><\/td>\r\nECD Skin Issues<\/a><\/td>\r\n<\/tr>\r\n
Giulio Cavalli, MD<\/em><\/td>\r\nECD Lung & Heart Issues<\/a><\/td>\r\nECD Lung & Heart Issues<\/a><\/td>\r\n<\/tr>\r\n
Carine Courtillot, MD<\/em><\/td>\r\nEndocrinological Consequences of ECD<\/a><\/td>\r\nEndocrinological Consequences of ECD<\/a><\/td>\r\n<\/tr>\r\n
Eli Diamond, MD<\/em>\r\n(Presented by Juvianee Estrada-Veras, MD) \u00a0\u00a0<\/em><\/td>\r\nECD Neurological Issues<\/a><\/td>\r\nECD Neurological Issues<\/a><\/td>\r\n<\/tr>\r\n
Benjamin Durham, MD<\/em><\/td>\r\nECD Studies at MSKCC<\/a><\/td>\r\nSee ECD Studies & Trials Panel<\/td>\r\n<\/tr>\r\n
Philippe A. Grenier, MD<\/em><\/td>\r\nCT of Thoracoabdominal Involvement in Erdheim-Chester Disease<\/a><\/td>\r\nSee\u00a0ECD Scan and Radiology Panel.<\/td>\r\n<\/tr>\r\n
Filip Janku, MD, PhD<\/em><\/td>\r\nImportance of Clinical Trials<\/a><\/td>\r\nSee ECD Studies & Trials Panel<\/td>\r\n<\/tr>\r\n
Kenneth L. McClain, MD, PhD<\/em><\/td>\r\nECD Studies & Trials \u2013 Texas Children\u2019s Cancer Center<\/a><\/td>\r\nSee ECD Studies & Trials Panel<\/td>\r\n<\/tr>\r\n
Augusto Vaglio, MD, PhD<\/em><\/td>\r\nRenal & Ureteral Involvement in ECD<\/a><\/td>\r\nRenal & Ureteral Involvement in ECD<\/a><\/td>\r\n<\/tr>\r\n
Panel participants:<\/em>Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD,\r\nJulien Haroche, MD, PhD, Filip Janku, MD, PhD,\r\nKenneth McClain, MD PhD, Augusto Vaglio, MD, PhD<\/em><\/td>\r\nECD Studies & Trials Panel<\/td>\r\nECD Studies & Trials Panel<\/a><\/td>\r\n<\/tr>\r\n
Panel participants:<\/em>Marcus Chen, MD, Phillippe Cluzel, MD PhD,\r\nPhillippe Grenier, MD, Phillippe Maksund, MD<\/em><\/td>\r\nECD Scan and Radiology Panel<\/td>\r\nECD Scan and Radiology Panel<\/a><\/td>\r\n<\/tr>\r\n
Physician panelists answer patient questions regarding Erdheim-Chester Disease.<\/em><\/td>\r\nDoctor Question & Answer Panel<\/td>\r\nDoctor Question & Answer Panel<\/a><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n[\/accordion-item][accordion-item title=\"Photos\"]\r\n\r\n\"\"\r\n\r\n[\/accordion-item]\r\n[\/accordion]\r\n

2015 Event Materials<\/h2>\r\n[accordion autoclose=false clicktoclose=true tag=h4]\r\n\r\n[accordion-item title=\"Presentations\"]\r\n\r\nPlease see the following presentations\u00a0from the 2015 Patient Gathering in Houston, TX.\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n\r\n
Presenter<\/strong><\/td>\r\nPresentation(s)<\/strong><\/td>\r\nVideos<\/strong><\/td>\r\n<\/tr>\r\n
Timothy Craig Allen, MD, JD<\/em><\/td>\r\nSocial Media in the Rare Disease World<\/a><\/td>\r\nNot available.<\/em><\/td>\r\n<\/tr>\r\n
Naifa Lamki Busaidy, MD<\/em><\/td>\r\nECD & Hormones<\/a><\/td>\r\nNot available.<\/em><\/td>\r\n<\/tr>\r\n
Jean Campbell<\/em><\/td>\r\nPower of Patient Groups<\/a><\/td>\r\nThe Power of Patient Groups<\/a><\/td>\r\n<\/tr>\r\n
Susan Y. Chon, MD<\/em><\/td>\r\nNot available.<\/em><\/td>\r\nECD and Skin<\/a><\/td>\r\n<\/tr>\r\n
Maxine Grace de la Cruz, MD<\/em><\/td>\r\nECD & Pain Management<\/a><\/td>\r\nECD and Pain Management<\/a><\/span><\/td>\r\n<\/tr>\r\n
Eli L. Diamond, MD<\/em><\/td>\r\nBraf\u00a0Negative<\/a>; ECD & Brain<\/a><\/td>\r\nNot available.<\/em><\/td>\r\n<\/tr>\r\n
Nancy K. Feeley, RN, MS, CRNP<\/em><\/td>\r\nECD & Exercise<\/a><\/td>\r\nECD and Exercise<\/a><\/span><\/td>\r\n<\/tr>\r\n
Horiana Grosu, MD<\/em><\/td>\r\nECD & Lungs<\/a><\/td>\r\nECD and the Lungs<\/a><\/td>\r\n<\/tr>\r\n
Saamir Hassan, MD<\/em><\/td>\r\nECD & Heart<\/a><\/td>\r\nECD and the Heart<\/a><\/span><\/td>\r\n<\/tr>\r\n
Filip Janku, MD, PhD<\/em><\/td>\r\nImportance of Clinical Trials<\/a><\/td>\r\nThe Importance of Clinical Trials\u00a0<\/a><\/td>\r\n<\/tr>\r\n
Cynthia Kizer, RN, BSN<\/em><\/td>\r\nInsurance Appeals<\/a><\/td>\r\nECD and Insurance Approval Issues<\/a><\/span><\/td>\r\n<\/tr>\r\n
Chaplain Richard T. Maddox, BCC<\/em><\/td>\r\nFacing Key Spiritual Care Issues<\/a><\/td>\r\nFacing Key Spiritual Issues<\/a><\/td>\r\n<\/tr>\r\n
Kenneth L. McClain, MD, PhD<\/em><\/td>\r\nECD101<\/a><\/td>\r\nECD 101<\/a><\/td>\r\n<\/tr>\r\n
Omar Ozgur, MD<\/em><\/td>\r\nECD & Eyes<\/a><\/td>\r\nECD and Eyes<\/a><\/span><\/td>\r\n<\/tr>\r\n
Susan Robertson, PhD, OTR\/L, FAOTA\u00a0<\/em><\/td>\r\nFinancial Stability & SSI<\/a><\/td>\r\nECD and Social Security Applications<\/a> <\/span><\/td>\r\n<\/tr>\r\n
Robert Zieve, MD<\/em><\/td>\r\nIntegrative Medicine<\/a><\/td>\r\nNot available.<\/em><\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n[\/accordion-item]\r\n\r\n[accordion-item title=\"Photos\"]\r\n\r\n\"\"\r\n\r\n[\/accordion-item]\r\n[\/accordion]","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-4281","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/pages\/4281","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=4281"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/pages\/4281\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=4281"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}