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 […]
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 […]
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 ultra-rare ECD now through September 18, 2021. Please consider helping our team share information about Erdheim-Chester Disease with others. The […]
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 […]
WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within […]
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, […]
CALLING ALL ADVOCATES! February 29, 2020, will be the 30th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, […]
Last updated: November 2, 2022
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