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 | Jan 4, 2022 | ECDGA News, General News, Research
A rare disease advocacy group awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study. Uplifting Athletes is a nonprofit organization focused on using the platform of college football to shine a spotlight on rare diseases. Founded in 2007,...
by admin | Jan 4, 2022 | ECDGA News, General News, Research
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to Italy doctor to explore the genetic landscape of ECD. The ECD Global Alliance (ECDGA) has awarded the 2021 ECD Research Grant to Dr. Francesco Pegoraro, with Meyer University...
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...
