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DTSTART;TZID=America/Chicago:20260407T130000
DTEND;TZID=America/Chicago:20260407T140000
DTSTAMP:20260604T062645
CREATED:20260325T031255Z
LAST-MODIFIED:20260325T031255Z
UID:10001369-1775566800-1775570400@www.erdheim-chester.org
SUMMARY:Topic: Living with ECD and Pain: Communicating\, Coping\, and Finding Support
DESCRIPTION:Speaker: Nicole Hemmenway\nChief Executive Officer\nU.S. Pain Foundation\nDate: April 7\, 2026\nTime: 1:00 PM CST \nNicole Hemmenway is the Chief Executive Officer of the U.S. Pain Foundation\, a patient-led nonprofit working to support the more than 60 million Americans living with chronic pain. A passionate advocate and nonprofit leader\, Nicole brings both professional expertise and lived experience to her work\, guiding the organization’s mission to educate\, empower\, connect\, and advocate for individuals living with pain\, as well as their care partners and providers. \nUnder her leadership\, the U.S. Pain Foundation has expanded access to peer support programs\, developed nationally recognized surveys that elevate the real experiences of people living with pain\, and amplified patient voices through initiatives like the INvisible Project. She is a frequent speaker at conferences\, medical schools\, and policy forums\, where she highlights the importance of compassionate care\, peer support\, equitable access to treatment\, and the integration of patient perspectives in research and decision-making. \nNicole’s work has been recognized nationally\, including being featured in a 2015 USA Today campaign and receiving the 2017 Unsung Hero Award. She is also the author of No\, It Is Not in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon. She lives in the Nashville area with her husband and three sons. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-living-with-ecd-and-pain-communicating-coping-and-finding-support/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260324T170000
DTEND;TZID=America/Chicago:20260324T180000
DTSTAMP:20260604T062645
CREATED:20260313T195743Z
LAST-MODIFIED:20260313T195840Z
UID:10001357-1774371600-1774375200@www.erdheim-chester.org
SUMMARY:Argomento: Vivere con la malattia di Erdheim-Chester: dalla diagnosi alla terapia
DESCRIPTION:Relatore: Dott. Francesco Peyronel\nNefrologo\, Centro Medico Corfù71\, Brescia\nRicercatore clinico\, PhD candidate presso\nl’Università di Firenze\nDate: 24 marzo 2026\nOrario: 17:00 CET (Firenze) \nLa malattia di Erdheim-Chester è una malattia rara che può coinvolgere diversi organi del corpo e richiede spesso un approccio multidisciplinare. In questo webinar verranno spiegati in modo semplice i principali aspetti della malattia: come si arriva alla diagnosi\, quali terapie sono oggi disponibili e come viene gestita nel tempo. L’obiettivo è aiutare pazienti e caregiver a comprendere meglio la malattia e il percorso di cura. \nBiografia: \nIl Dott. Francesco Peyronel è medico specialista in nefrologia e svolge attività clinica e di ricerca nel campo delle malattie renali e delle malattie rare. Ha conseguito la specializzazione presso l’Università di Parma e sta completando il dottorato di ricerca in scienze cliniche presso l’Università di Firenze. La sua attività di ricerca è dedicata in particolare allo studio delle malattie rare sistemiche con coinvolgimento renale\, tra cui la malattia di Erdheim-Chester. Collabora con gruppi di ricerca internazionali e partecipa a progetti volti a migliorare la comprensione della malattia e la gestione clinica dei pazienti. \nRegister Here
URL:https://www.erdheim-chester.org/event/argomento-vivere-con-la-malattia-di-erdheim-chester-dalla-diagnosi-alla-terapia/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260219T130000
DTEND;TZID=America/Chicago:20260219T140000
DTSTAMP:20260604T062645
CREATED:20260201T213954Z
LAST-MODIFIED:20260201T214027Z
UID:10001279-1771506000-1771509600@www.erdheim-chester.org
SUMMARY:Topic: Managing Pain\, Fatigue\, & Depression  in ECD
DESCRIPTION:Speaker: Kevin O’Brien\nRN\, MS-CRNP\, Nurse Practitioner\,\nClinical Investigator\, Genome Research Institute\,\nNational Institutes of Health\nDate: February 19\, 2026\nTime: 1:00 PM CST \nKevin O’Brien is a nurse practitioner and clinical investigator at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health in Bethesda\, Maryland. He earned his Bachelor of Science degree from Johns Hopkins University and his Master of Science and Nurse Practitioner degree from the University of Maryland. \nKevin has played a key role in NHGRI clinical research\, including protocol 15-HG-0006\, a clinical trial investigating dabrafenib and trametinib in BRAF-positive patients with Erdheim-Chester disease (ECD)\, as well as the Natural History of ECD study. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-managing-pain-fatigue-depression-in-ecd/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260129T130000
DTEND;TZID=America/Chicago:20260129T140000
DTSTAMP:20260604T062645
CREATED:20260114T135239Z
LAST-MODIFIED:20260114T142020Z
UID:10001159-1769691600-1769695200@www.erdheim-chester.org
SUMMARY:Topic: Erdheim-Chester Disease (ECD): A Nephrology Perspective
DESCRIPTION:Speaker: Mo Atta\, MD\, MPH\nJohns Hopkins Hospital\nDepartment of Nephrology\nDate: January 29\, 2026\nTime: 1:00 PM CST \nDr. Mohamed G. Atta is a Professor of Medicine at Johns Hopkins University where he’s a practicing Nephrologist. He trained in nephrology at the Urology and Nephrology Center at Mansoura University and at Johns Hopkins. Dr. Atta also holds a Master of Public Health degree from Johns Hopkins and is a member of multiple professional organizations\, including the American Society of Nephrology. He has been the principal investigator on several studies\, serves as a peer reviewer for numerous medical journals\, and has authored many articles across a range of scientific publications. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-rdheim-chester-disease-ecd-a-nephrology-perspective/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251201T170000
DTEND;TZID=America/Chicago:20251201T180000
DTSTAMP:20260604T062645
CREATED:20251111T210318Z
LAST-MODIFIED:20251112T153710Z
UID:10001027-1764608400-1764612000@www.erdheim-chester.org
SUMMARY:Topic: Erdheim-Chester Disease (ECD): Decoding diagnosis and treatments
DESCRIPTION:Speaker: Jerome Razanamahery\, MD\nDijon University Hospital\nDate: December 1\, 2025\nTime: 5:00 PM CET (UTC +1) (Paris Time) \nDr. Razanamahery is an expert in internal medicine with a recognized specialization in the field of rare histiocytoses\, including Erdheim-Chester Disease (ECD). He is a clinician-researcher at the University Hospital Center of Dijon\, where he heads the unit dedicated to histiocytic disorders. \nWith many years of experience and under the mentorship of Pr Haroche\, Dr. Razanamahery actively participates in clinical research and is a member of national and international reference networks on histiocytoses. His commitment is to provide cutting-edge care while ensuring that every patient and their family receive clear information and personalized support to navigate the complexity of this disease as effectively as possible.\nRegister Here
URL:https://www.erdheim-chester.org/event/topic-erdheim-chester-disease-ecd-decoding-diagnosis-and-treatments/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251119T060000
DTEND;TZID=America/Chicago:20251119T070000
DTSTAMP:20260604T062645
CREATED:20251103T152600Z
LAST-MODIFIED:20251112T152659Z
UID:10000967-1763532000-1763535600@www.erdheim-chester.org
SUMMARY:Topic: Diagnosis and Treatment of Histiocytic Disorders
DESCRIPTION:Speaker: XinXin Cao\, MD\nCancer Hospital\, Chinese Academy of Medical Sciences\, Chief Physician\, PhD Supervisor\, Deputy Director of Internal Medicine (Langfang Campus) Has long been engaged in clinical and basic research on histiocytic disorders. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-diagnosis-and-treatment-of-histiocytic-disorders/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251021T140000
DTEND;TZID=America/Chicago:20251021T150000
DTSTAMP:20260604T062645
CREATED:20251003T132347Z
LAST-MODIFIED:20251009T130802Z
UID:10000931-1761055200-1761058800@www.erdheim-chester.org
SUMMARY:Topic: Exploring of alternating signaling and its impact on precision therapy in patients with Erdheim-Chester Disease
DESCRIPTION:Date: October 21\, 2025\nTime: 2:00 PM CT \nSpeaker: Samuel B. Reynolds\, M.D.\nMoffitt Cancer Center\nDr. Reynolds is originally from the Boston area and completed medical school at The University of South Florida Morsani College of Medicine. He would then complete an Internal Medicine residency and chief residency at The University of Louisville and a Hematology & Medical Oncology fellowship at The University of Michigan. He began to focus on histiocytic neoplasms in the later part of his training in Ann Arbor. Here\, he founded the Michigan Histiocytosis Working Group and has since joined the Histiocytosis Care Network as a researcher and physician. \nThroughout his career\, Dr. Reynolds has been passionate about the molecular characterization and translational care of hematologic disorders. Under his T32 at The University of Michigan\, he would publish several manuscripts pertaining to both outcomes with respect to targeted therapy and trends in peripheral blood monocytosis in histiocytic disorders. He currently serves as an Assistant Professor at the Moffitt Cancer Center and specializes in the research and care of myeloid and histiocytic neoplasms. \nThe webinar will explore the diversity of Erdheim-Chester Disease (ECD)\, both among patients and at the genetic level. Because ECD is a rare and complex hematologic cancer\, individualized treatment requires a collaborative approach. Understanding each patient’s unique molecular profile—the DNA changes that drive their disease—is key to guiding effective therapy. \n  \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-exploring-of-alternating-signaling-and-its-impact-on-precision-therapy-in-patients-with-erdheim-chester-disease/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250923T130000
DTEND;TZID=America/Chicago:20250923T140000
DTSTAMP:20260604T062645
CREATED:20250912T141227Z
LAST-MODIFIED:20251003T132823Z
UID:10000859-1758632400-1758636000@www.erdheim-chester.org
SUMMARY:Topic: Survivorship in Erdheim-Chester Disease: Incorporating the patient voice
DESCRIPTION:Date: September 23\, 2025\nTime: 1:00 PM CT \nSpeaker: Gaurav Goyal\, M.D.\nUniversity of Alabama at Birmingham\nDr. Goyal was born and raised in India and completed his Hematology-Oncology Fellowship at the Mayo Clinic in Rochester\, Minnesota. During his time at the Mayo Clinic\, he developed a specialized focus on histiocytic disorders\, including Erdheim-Chester Disease\, Langerhans cell histiocytosis\, and Rosai-Dorfman Disease. He conducted multiple studies on histiocytosis and played a key role in establishing the first multidisciplinary Histiocytosis Working Group\, aimed at improving care for individuals affected by these rare disorders. \nDr. Goyal subsequently joined the Hematology-Oncology Division at the University of Alabama at Birmingham (UAB)\, where he founded an Erdheim-Chester Disease care center. At UAB\, he also launched the Histiocytic Disorder Survivor Study in partnership with the Erdheim-Chester Disease Global Alliance (ECDGA)\, further advancing research and support for patients with histiocytic disorders. \n  \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-survivorship-in-erdheim-chester-disease-incorporating-the-patient-voice/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250828T140000
DTEND;TZID=America/Chicago:20250828T170000
DTSTAMP:20260604T062645
CREATED:20250826T104649Z
LAST-MODIFIED:20251003T132913Z
UID:10000535-1756389600-1756400400@www.erdheim-chester.org
SUMMARY:Topic: Managing Diabetes Insipidus (DI)
DESCRIPTION:[Arginine VasoPressin Deficiency (AVP-D)]\nSpeaker: Pat Gildroy\, Ph.D\nPat Gildroy\, lead administrator of the Facebook Group\, “Got Arginine VasoPressin Deficiency?” about the resources\, symptoms\, tests\, and the patient experience for those living with Arginine Vasopressin Deficiency\, formerly known as Diabetes Insipidus. \nRegister Here
URL:https://www.erdheim-chester.org/event/topic-managing-diabetes-insipidus-di/
CATEGORIES:Webinars
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250806T120000
DTEND;TZID=America/Chicago:20250806T130000
DTSTAMP:20260604T062645
CREATED:20250826T105912Z
LAST-MODIFIED:20250910T140622Z
UID:10000547-1754481600-1754485200@www.erdheim-chester.org
SUMMARY:ECD\, A Global Vision
DESCRIPTION:Watch webinar on youtube \nXavier Solanich\, MD\, PhD is an internal medicine physician at Bellvitge University Hospital (BUH)\, where he specializes in the treatment of patients with immunological disorders and rare diseases\, including histiocytosis. In addition to his clinical work\, he serves as a professor at the University of Barcelona and as principal investigator at the Bellvitge Biomedical Research Institute (IDIBELL). Dr. Solanich has contributed to numerous national and international research projects focused on autoimmune diseases\, immunodeficiencies\, and other rare disorders. \nAs the lead physician at the ECD Care Center at BUH\, Dr. Solanich oversees the care of patients with ECD\, a condition historically viewed as a multisystem inflammatory disorder. Recent breakthroughs in the genetics and immunology of the disease have revolutionized its understanding and treatment\, prompting physicians to update and refine their protocols accordingly.
URL:https://www.erdheim-chester.org/event/ecd-a-global-vision/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250502T120000
DTEND;TZID=America/Chicago:20250502T130000
DTSTAMP:20260604T062645
CREATED:20250826T113024Z
LAST-MODIFIED:20250909T150936Z
UID:10000583-1746187200-1746190800@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 1: Overview of Services
DESCRIPTION:Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-1-overview-of-services/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250401T070000
DTEND;TZID=America/Chicago:20250401T160000
DTSTAMP:20260604T062645
CREATED:20250826T111525Z
LAST-MODIFIED:20250910T084446Z
UID:10000559-1743490800-1743523200@www.erdheim-chester.org
SUMMARY:The Leukemia & Lymphoma Society Support Series Part 3: Clinical Trial Support Center
DESCRIPTION: \nThe Leukemia & Lymphoma Society offers a free service called the Clinical Trial Support Center (CTSC) to help blood cancer patients\, caregivers\, and healthcare professionals find potential clinical trials and overcome enrollment barriers. This webinar will discuss the process and support Erdheim-Chester patients.
URL:https://www.erdheim-chester.org/event/the-leukemia-lymphoma-society-support-series-part-3-clinical-trial-support-center/
CATEGORIES:Webinars
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250313T120000
DTEND;TZID=America/Chicago:20250313T130000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250225T120000
DTEND;TZID=America/Chicago:20250225T130000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250123T120000
DTEND;TZID=America/Chicago:20250123T130000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241123T120000
DTEND;TZID=America/Chicago:20241123T130000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220921T120000
DTEND;TZID=America/Chicago:20220921T120000
DTSTAMP:20260604T062645
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220815T120000
DTEND;TZID=America/Chicago:20220815T130000
DTSTAMP:20260604T062645
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:20260604T062646
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20220505T120000
DTEND;TZID=America/Chicago:20220505T130000
DTSTAMP:20260604T062646
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:20260604T062646
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:20260604T062646
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:20260604T062646
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:20260604T062646
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210629T120000
DTEND;TZID=America/Chicago:20210629T130000
DTSTAMP:20260604T062646
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:20260604T062646
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
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20210624T120000
DTEND;TZID=America/Chicago:20210624T130000
DTSTAMP:20260604T062646
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:20260604T062646
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
END:VCALENDAR