by admin | Jan 4, 2022 | News, Research & Awareness
A rare disease advocacy group awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study. Uplifting Athletes is a nonprofit organization focused on using the platform of college football to shine a spotlight on rare diseases. Founded in 2007,...
by admin | Jun 10, 2021 | News
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Michigan Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to introduce the newest addition to the ECD Referral Care Center network,...
by admin | Feb 17, 2021 | News, Research & Awareness
WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th 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 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 | 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...
