by admin | Jan 8, 2021 | News
Erasmus University Medical Center in Rotterdam joins the ECD Referral Care Center network of hospitals skilled in treating Erdheim-Chester disease patients. The Erdheim-Chester Disease (ECD) Global Alliance welcomes Erasmus University Medical Center in Rotterdam,...
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 | May 19, 2020 | Community & Support
As spring slips away and summer is within our grasp, our natural urge to enjoy the great outdoors intensifies. However, even limited sun exposure can be dangerous to ECD patients under some targeted-therapies. If you are being treated with a BRAF or MEK-inhibitor, or...
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...
