by admin | Sep 13, 2020 | Community & Support, Research & Awareness
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...
by admin | Apr 21, 2020 | News
You are likely already a member of the ECD Global Alliance and we hope that you have been able to find help and comfort in the resources that we have available to our members. It is our amazing team of volunteers, donors, medical professionals, and staff who make it...
by admin | Feb 25, 2020 | News
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...
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...
