by Kathy Brewer | Nov 11, 2022 | ECDGA News, General News
International Histio Advocacy Coalition Meeting Stockholm, Sweden September 2022 Patient advocacy groups from around the world, including the ECD Global Alliance, gathered in September 2022 as part of the Histiocytosis Society (HS) annual meeting. The HS is an...
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 | Jun 3, 2022 | ECDGA News, General News, Living with ECD
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...
