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 […]
The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao. On September 29, 2022, the initiative brought over 65 families from the China region together […]
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 – […]
June 3, 2022 – The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida. The Erdheim-Chester Disease (ECD) Global Alliance is proud to announce a new emerging ECD Referral Care Center located at the University of Florida (UF) in Gainesville. Dr. Ali Ataya, who specializes in pulmonary […]
Rare Disease Day is on February 28, 2022! In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, with 1 in 10 Americans being affected. Patients that have a rare disorder have longer periods of suffering before finding answers. Often, patients are treated “off-label” (treatments […]
A new year of hope is on the horizon for the ECD community! View the 2021 Year-End Newsletter. The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a matching gift campaign through December 31, 2021! Thanks to an $80,000 matching gift from a group of generous ECDGA Board […]
The member-hosted ECD Virtual Run/Walk this month has served to raise funds for research on this rare disease, increase awareness, and pull together supporters for all those fighting ECD. The Atnip family gathered on the recent Father’s Day to reach new heights together in support of their father and husband, and the entire community! Climbing […]
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 […]
By Chris Evans – ECD Awareness Week 2020 My sister, Raina, was diagnosed with a histiocytic disorder similar to Erdheim-Chester Disease in many ways. She fought valiantly against the disease for several years, even enduring an unusually painful bone marrow transplant. Thankfully, I was a match for her and it extended her life with us, […]
Facing a rare disease can seem like an uphill battle from time to time. The side effects of rare diseases, such as ECD are not only seen and felt from the disease itself or the treatments received. Many patients are faced with other effects that are not direct side-effects of the disease. Below are a […]
Last updated: November 2, 2022
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