by Kathy Brewer | Oct 20, 2022 | Awareness, ECDGA News, General News, Living with ECD, Research
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...
by admin | Feb 24, 2022 | Awareness, General News, Living with ECD
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...
by admin | Dec 16, 2021 | Awareness, ECDGA News, Fundraising, General News, Living with ECD
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...
by admin | Sep 13, 2021 | Awareness, ECDGA News, General News
Erdheim-Chester Disease Awareness Week September 13 – 18, 2021 #SharingIsKey #ECDawareness #AwarenessWeek The ECD Global Alliance is hosting its 7th Annual Erdheim-Chester Disease Awareness Week! Join our community in raising awareness of the...
by admin | Jun 24, 2021 | Awareness, Fundraising, General News, Living with ECD
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...
by admin | Mar 1, 2021 | Awareness, ECDGA News, General News, Living with ECD, Research
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...
