Upcoming Webinars & Recordings

Please read our Virtual Participation Policy before joining an ECD Global Alliance webinar. To receive emails about these events, please sign-up here.

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Expert-led webinars are scheduled as often as possible for all audiences. Stay tuned for more webinars this year!

Upcoming:

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REGISTER HERE:

Caring for yourself through the holidays

Speaker: RuthAnn Batchelder, Former ECD Caregiver

My husband, Lance, was diagnosed in 1995, many years before the ECD Global Alliance was formed so effective treatments were not yet available. He was sick for 25 of the 27 years we were together. My role as his caregiver evolved over time— initially only attending appointments and treatments with him, to ultimately leaving my job to care for him full-time. I was with him through every stage, until he passed away in 2020.

Tuesday, December 10, 2024

1:00 PM Central Time (US and Canada)

This live conversation will be most beneficial to Caregivers

 

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Recordings

The following videos are also posted to our YouTube Channel.

BEYOND THE OFFICE VISIT: Managing the Cost of Histio Care
This 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.
Recorded February 2022

Impact on adult patients with LCH and Erdheim Chester, ongoing treatments, and studies
Dr. 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 and 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. 
Recorded September 2021

Understanding the NCCN Clinical Practice Guidelines for Histiocytic Neoplasms
A 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. 
Recorded June 2021

Endocrine Conditions in Erdheim-Chester Disease
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. 
Recorded March 2021

Histio Patient Needs: A Focus on the Eyes and Vision
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.
Recorded February 2021

Erdheim-Chester disease: A review of updated guidelines in the molecular era
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.
Recorded November 2020

Using ECD Consensus Recommendations: Advocating for your health
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.
Recorded June 2020