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PRODID:-//Erdheim-Chester Disease Global Alliance - ECPv6.16.3//NONSGML v1.0//EN
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X-WR-CALNAME:Erdheim-Chester Disease Global Alliance
X-ORIGINAL-URL:https://www.erdheim-chester.org
X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250313T120000
DTEND;TZID=America/Chicago:20250313T130000
DTSTAMP:20260604T083959
CREATED:20250826T124738Z
LAST-MODIFIED:20250910T092359Z
UID:10000691-1741867200-1741870800@www.erdheim-chester.org
SUMMARY:Rosai Dorfman Disease
DESCRIPTION:Discover insights from a leading expert on Rosai-Dorfman Disease. Gain a deeper understanding of this rare condition\, its symptoms\, diagnosis\, and the latest treatment options. Don’t miss out on expert knowledge that could make a difference!
URL:https://www.erdheim-chester.org/event/rosai-dorfman-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Rosai-Dorfman-Disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250225T120000
DTEND;TZID=America/Chicago:20250225T130000
DTSTAMP:20260604T083959
CREATED:20250826T112000Z
LAST-MODIFIED:20250910T083240Z
UID:10000571-1740484800-1740488400@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 2: Information Resource Center
DESCRIPTION:Information Specialists offer free\, one-on-one education\, psychosocial support\, and advocacy for blood cancer patients\, caregivers\, and families. They cover disease and treatment options\, clinical trials\, mental health support\, and treatment team communication.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-2-information-resource-center/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/The-Leukemia-Lymphoma-Society-Support-Series-Part-2-Information-Resource-Center.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T083959
CREATED:20250826T124624Z
LAST-MODIFIED:20250910T091948Z
UID:10000679-1737633600-1737637200@www.erdheim-chester.org
SUMMARY:Caring for yourself through the holidays
DESCRIPTION:Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.
URL:https://www.erdheim-chester.org/event/caring-for-yourself-through-the-holidays/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Caring-for-yourself-through-the-holidays.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T083959
CREATED:20250826T124500Z
LAST-MODIFIED:20250910T091548Z
UID:10000667-1737633600-1737637200@www.erdheim-chester.org
SUMMARY:Coping Strategies for Depression & Anxiety
DESCRIPTION:Listen to Kevin O’Brien\, NP\, and Josef Lacy discussing mental health challenges and effective techniques for overcoming them. Gain insights firsthand from an ECD patient who shares his inspiring journey triumphing over mental health issues.
URL:https://www.erdheim-chester.org/event/coping-strategies-for-depression-anxiety/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Coping-Strategies-for-Depression-Anxiety.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241123T120000
DTEND;TZID=America/Chicago:20241123T130000
DTSTAMP:20260604T083959
CREATED:20250826T124355Z
LAST-MODIFIED:20250910T091106Z
UID:10000655-1732363200-1732366800@www.erdheim-chester.org
SUMMARY:Dr. Girschikofsky- erklärt Patienten und Familien ECD auf Deutsch
DESCRIPTION:Dr. Michael Girschikofsky from the Elisabethinen Hospital Linz explains ECD to German-speaking ECD patients and families.
URL:https://www.erdheim-chester.org/event/dr-girschikofsky-erklart-patienten-und-familien-ecd-auf-deutsch/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Dr.-Girschikofsky-erklart-Patienten-und-Familien-ECD-auf-Deutsch.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220921T120000
DTEND;TZID=America/Chicago:20220921T120000
DTSTAMP:20260604T083959
CREATED:20250826T124245Z
LAST-MODIFIED:20250910T090609Z
UID:10000643-1663761600-1663761600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Navigating Clinical Trials for Histiocytosis
DESCRIPTION:Taking part in a clinical trial can have many benefits for the patient and the community. We hope this session will help you better understand clinical trials\, how to talk to your doctor about trials\, and leave you feeling prepared with the right resources.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-navigating-clinical-trials-for-histiocytosis/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Navigating-Clinical-Trials-for-Histiocytosis.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220815T120000
DTEND;TZID=America/Chicago:20220815T130000
DTSTAMP:20260604T083959
CREATED:20250826T124140Z
LAST-MODIFIED:20250910T140206Z
UID:10000631-1660564800-1660568400@www.erdheim-chester.org
SUMMARY:Erdheim-Chester Disease Targeted Therapies: The good and the bad
DESCRIPTION:Watch webinar on youtube \nLearn about the treatments used to treat Erdheim-Chester disease (ECD)\, what to expect over time and the side effects that may be involved. Ginny-Tyler Meadows is a clinical pharmacist serving the hematology/oncology clinics at The Kirklin Clinic at the University of Alabama at Birmingham Hospital. She specifically assists patients with prescribed oral oncolytic therapies. She is passionate about patient education and advocacy in addition to increasing patient access to medications.
URL:https://www.erdheim-chester.org/event/erdheim-chester-disease-targeted-therapies-the-good-and-the-bad/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Erdheim-Chester-Disease-Targeted-Therapies-The-good-and-the-bad.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220519T120000
DTEND;TZID=America/Chicago:20220519T130000
DTSTAMP:20260604T083959
CREATED:20250826T124011Z
LAST-MODIFIED:20250910T085946Z
UID:10000619-1652961600-1652965200@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Moving Through Rare Disease
DESCRIPTION:Tim Facciola\, Certified Personal Trainer & Movement Specialist\, joins us in a conversation about incorporating movement and exercise into life when managing a chronic illness or a rare disease\, such as Erdheim-Chester Disease.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-moving-through-rare-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Moving-Through-Rare-Disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220505T120000
DTEND;TZID=America/Chicago:20220505T130000
DTSTAMP:20260604T083959
CREATED:20250826T123859Z
LAST-MODIFIED:20250910T084050Z
UID:10000607-1651752000-1651755600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit - Part Two: Functional Nutrition & Wellness
DESCRIPTION:The ECD Global Alliance (ECDGA) and the Histiocytosis Association co-host Beyond the Office Visit virtual education series\, Part Two: Functional Nutrition & Wellness. During this session\, Certified Health Coach and Certified Functional Nutrition Practitioner\, Alyssa Cabral\, explained the role of functional wellness and nutrition when living with or caring for someone with histiocytosis or any rare/chronic condition.
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-part-two-functional-nutrition-wellness/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Part-Two-Functional-Nutrition-Wellness.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220301T120000
DTEND;TZID=America/Chicago:20220301T130000
DTSTAMP:20260604T083959
CREATED:20250826T124939Z
LAST-MODIFIED:20250910T135723Z
UID:10000703-1646136000-1646139600@www.erdheim-chester.org
SUMMARY:Beyond the Office Visit: Managing the Cost of Histio Care
DESCRIPTION:Watch webinar on youtube \nThis is the start of the Beyond the Office Visit virtual education series co-hosted with the Histiocytosis Association. Speakers Deandre Pate and Victoria Lassen from Memorial Sloan Kettering walk through ways to manage healthcare costs\, find local assistance\, and improve logistical burdens while living with a histiocytosis disorder.\nRecorded February 2022
URL:https://www.erdheim-chester.org/event/beyond-the-office-visit-managing-the-cost-of-histio-care/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Beyond-the-Office-Visit-Managing-the-Cost-of-Histio-Care.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20211122T120000
DTEND;TZID=America/Chicago:20211122T130000
DTSTAMP:20260604T083959
CREATED:20250826T123724Z
LAST-MODIFIED:20250910T140330Z
UID:10000595-1637582400-1637586000@www.erdheim-chester.org
SUMMARY:2021 ECD Virtual Medical Symposium
DESCRIPTION:Watch webinar on youtube \nThe 8th Annual International ECD Medical Symposium was held on November 16\, 2021. This virtual experience was organized in hopes that the medical community is provided the opportunity to share scientific findings\, patient outcomes\, and case studies related to Erdheim-Chester Disease and other histiocytic disorders.
URL:https://www.erdheim-chester.org/event/2021-ecd-virtual-medical-symposium/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/2021-ECD-Virtual-Medical-Symposium.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210927T120000
DTEND;TZID=America/Chicago:20210927T130000
DTSTAMP:20260604T083959
CREATED:20250826T131009Z
LAST-MODIFIED:20250910T083705Z
UID:10000787-1632744000-1632747600@www.erdheim-chester.org
SUMMARY:Talk for adult patients with Histiocytosis and ECD. Organized by OR Association and HA.
DESCRIPTION: \nImpact on adult patients with LCH and Erdheim-Chester\, ongoing treatments\, and studies\nDr. Gaurav Goyal\, University of Alabama\, Birmingham\, led the educational meeting by presenting the topic of Impact on adult patients with LCH and Erdheim-Chester\, ongoing treatments\, and studies.  The talk included descriptions of adult histiocytic disorders\, common clinical features\, and treatments that have been found effective. Diagnostic tips were shared to help physicians confirm an accurate diagnosis of these similar diseases. \nRecorded September 2021
URL:https://www.erdheim-chester.org/event/talk-for-adult-patients-with-histiocytosis-and-ecd-organized-by-or-association-and-ha/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Talk-for-adult-patients-with-Histiocytosis-and-ECD.-Organized-by-OR-Association-and-HA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210720T120000
DTEND;TZID=America/Chicago:20210720T130000
DTSTAMP:20260604T083959
CREATED:20250826T125935Z
LAST-MODIFIED:20250910T094016Z
UID:10000727-1626782400-1626786000@www.erdheim-chester.org
SUMMARY:Erdheim-Chester disease: A review of updated guidelines in the molecular era
DESCRIPTION:In this review of the latest ECD Consensus Guidelines 2020\, the presentation and discussion are tailored for the medical professional community. Please share with your colleagues or care team.\nRecorded November 2020
URL:https://www.erdheim-chester.org/event/erdheim-chester-disease-a-review-of-updated-guidelines-in-the-molecular-era/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Erdheim-Chester-disease-A-review-of-updated-guidelines-in-the-molecular-era.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210629T120000
DTEND;TZID=America/Chicago:20210629T130000
DTSTAMP:20260604T083959
CREATED:20250826T130616Z
LAST-MODIFIED:20250910T135755Z
UID:10000763-1624968000-1624971600@www.erdheim-chester.org
SUMMARY:Understanding the NCCN Clinical Practice Guidelines for Histiocytic Neoplasms
DESCRIPTION:Watch webinar on youtube \nA review of the recently published National Comprehensive Cancer Network (NCCN) Guidelines® for Histiocytosis. The NCCN developed these new clinical practice guidelines to provide the latest evidence and expert consensus for diagnosing and treating the three most common forms of histiocytosis in adults: Langerhans cell histiocytosis (LCH)\, Erdheim-Chester disease (ECD)\, and Rosai-Dorfman disease.\nRecorded June 2021
URL:https://www.erdheim-chester.org/event/understanding-the-nccn-clinical-practice-guidelines-for-histiocytic-neoplasms/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Understanding-the-NCCN-Clinical-Practice-Guidelines-for-Histiocytic-Neoplasms.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210624T120000
DTEND;TZID=America/Chicago:20210624T130000
DTSTAMP:20260604T083959
CREATED:20250826T130147Z
LAST-MODIFIED:20250910T094751Z
UID:10000751-1624536000-1624539600@www.erdheim-chester.org
SUMMARY:Endocrine Conditions in Erdheim-Chester Disease
DESCRIPTION:This webinar\, co-hosted by the Histiocytosis Association and Erdheim-Chester Disease Global Alliance focused on ECD and covers endocrine conditions and their management across all histiocytic disorders.\nRecorded March 2021
URL:https://www.erdheim-chester.org/event/endocrine-conditions-in-erdheim-chester-disease/
CATEGORIES:Webinars
ATTACH;FMTTYPE=image/png:https://www.erdheim-chester.org/wp-content/uploads/2025/08/Endocrine-Conditions-in-Erdheim-Chester-Disease.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210624T120000
DTEND;TZID=America/Chicago:20210624T130000
DTSTAMP:20260604T083959
CREATED:20250826T130035Z
LAST-MODIFIED:20250910T094317Z
UID:10000739-1624536000-1624539600@www.erdheim-chester.org
SUMMARY:Histio Patient Needs: A Focus on the Eyes and Vision
DESCRIPTION:In this webinar\, the doctors at Memorial Sloan Kettering Cancer Center (MSK) help further your understanding of how current eye involvement may affect daily life and how to obtain better outcomes and results. This will also be of interest to those patients that do not have any current eye involvement\, but their upcoming treatments may cause eye concerns.\nRecorded February 2021
URL:https://www.erdheim-chester.org/event/histio-patient-needs-a-focus-on-the-eyes-and-vision/
CATEGORIES:Webinars
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;TZID=America/Chicago:20200701T120000
DTEND;TZID=America/Chicago:20200701T130000
DTSTAMP:20260604T083959
CREATED:20250826T125837Z
LAST-MODIFIED:20250910T093813Z
UID:10000715-1593604800-1593608400@www.erdheim-chester.org
SUMMARY:Using ECD Consensus Recommendations: Advocating for your health
DESCRIPTION:An educational webinar was held to explain the newest Erdheim-Chester Disease (ECD) consensus document and learn how to use it for care and payer support.  Questions answered following the meeting are posted here.\nRecorded June 2020
URL:https://www.erdheim-chester.org/event/using-ecd-consensus-recommendations-advocating-for-your-health/
CATEGORIES:Webinars
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
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