by Kathy Brewer | Jan 16, 2023 | ECDGA News, General News, Research
Uplifting Athletes, a nonprofit organization dedicated to serving the rare disease community, has announced that Dr. Jithma Abeykoon will receive a $20,000 research grant as a member of Uplifting Athletes’ 2023 Young Investigator Draft Class. Dr. Abeykoon was...
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 Kathy Brewer | Oct 14, 2022 | General News, Living with ECD
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...
by admin | Sep 21, 2022 | ECDGA News, General News, Living with ECD
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...
by admin | Nov 1, 2021 | ECDGA News, General News
A rare community will join together to connect & learn. Finally, the Erdheim-Chester Disease (ECD) community of patients, loved ones, and physicians will gather together again! During the challenges of the pandemic, serving our members remained the top...
