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X-WR-CALDESC:Events for Erdheim-Chester Disease Global Alliance
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DTSTART;TZID=America/Chicago:20260129T130000
DTEND;TZID=America/Chicago:20260129T140000
DTSTAMP:20260619T082440
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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DTSTART;TZID=America/Chicago:20260219T130000
DTEND;TZID=America/Chicago:20260219T140000
DTSTAMP:20260619T082440
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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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260324T170000
DTEND;TZID=America/Chicago:20260324T180000
DTSTAMP:20260619T082440
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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DTSTART;TZID=America/Chicago:20260407T130000
DTEND;TZID=America/Chicago:20260407T140000
DTSTAMP:20260619T082440
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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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260625T130000
DTEND;TZID=America/Chicago:20260625T140000
DTSTAMP:20260619T082440
CREATED:20260604T204916Z
LAST-MODIFIED:20260604T214736Z
UID:10001610-1782392400-1782396000@www.erdheim-chester.org
SUMMARY:Topic: Managing ECD Pain & Fatigue
DESCRIPTION:Speaker: Kevin O’Brien\nRN\, MS-CRNP\, Nurse Practitioner\,\nClinical Investigator\, Genome Research Institute\,\nNational Institutes of Health\nDate: Thursday\, June 25\, 2026\nTime: 1:00 PM CDT \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. Register Here
URL:https://www.erdheim-chester.org/event/managing-ecd-pain-fatigue/
CATEGORIES:Webinars
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