by admin | Feb 19, 2020 | News
Are you a part of the ECD Patient Registry? Did you know that it is extremely important to take part in such a registry? Understanding every aspect of trials, registries, or simply getting treatment for a rare disease can be overwhelming. Let us help explain the...
by admin | Jan 30, 2020 | Community & Support
For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. These symptoms may be seen in newly diagnosed patients as well as those...
by admin | Oct 23, 2019 | Community & Support
We are 10 YEARS STRONG!! The ECDGA is raising funds for the future and we need your help! We ask you to request 10 of your friends or family to donate $10 each for a 10-week celebration! From October 10 to December 12, the 10-10-10 event will be our...
by admin | Sep 28, 2019 | News
Matriarch, President and Founder of the ECD Global Alliance: Kathleen Brewer. Over the last 10 years, Kathy kept her promise to never stop searching for answers. Kathy’s perseverance through the trials and tragedy led her to what the ECD Global Alliance is today....
