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...
What is a consensus? A medical consensus is a report on a specific subject, such as Erdheim-Chester Disease, from a group of medical experts that have a particular knowledge of the disease. This group of experts agree on evidence-based and state-of-the-art...
The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this information with the assistance and guidance of...
We are all aware of the COVID-19 virus (coronavirus) risks that are currently in the news. In light of this and on the advice of the CDC, it is prudent for anyone with underlying medical conditions to take precautions. Please see...
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...
