by admin | Jun 24, 2021 | Community & Support, News, Research & Awareness
The member-hosted ECD Virtual Run/Walk this month has served to raise funds for research on this rare disease, increase awareness, and pull together supporters for all those fighting ECD. The Atnip family gathered on the recent Father’s Day to reach new heights...
by admin | Mar 24, 2020 | Community & Support, News
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...
by admin | Mar 16, 2020 | News
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...
