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ECDGA Attends International Histio Advocacy Coalition Meeting in Sweden

International Histio Advocacy Coalition Meeting Stockholm, Sweden September 2022 Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 as part of the Histiocytosis Society (HS) annual meeting.  The HS is an international group of more than 200 physicians and scientists committed to improving the lives of patients with […]

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New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients

New Paper Details Challenges of Caregiving for ECD and Rare Disease Patients A new paper published in Lancet eClinicalMedicine, details both the meaningful benefits and the challenges of caregiving for patients with rare cancers, such as Erdheim-Chester Disease (ECD). The paper was created through a collaboration of physicians and health organizations, including the Erdheim-Chester Disease Global […]

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ECD Ohio Regional Patient & Family Gathering

Join us virtually on October 7, 2022! Register for Online Attendance    Times are shown in Eastern U.S. Time.   10:00 am – Dr. Robert Franklin Welcome to the University of Cincinnati! Information will be shared about the UC clinic, staff, specialists they work with, and what makes their center special.   10:15 am – […]

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NCCN Histiocytosis Guidelines Released

National Comprehensive Cancer Network (NCCN) Guidelines for Histiocytosis Published March 2021 The ECDGA is pleased to announce that the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—has published a new NCCN Guidelines® for Histiocytosis.  These clinical practice guidelines provide the latest evidence and expert-consensus for diagnosing and treating the three most common forms […]

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Last updated: November 11, 2022

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