Education & Support for ECD Patients Living in China

Education & Support for ECD Patients Living in China

The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao. On...
ECD Ohio Regional Patient & Family Gathering

ECD Ohio Regional Patient & Family Gathering

Join us virtually on October 7, 2022! Register for Online Attendance   Times are shown in Eastern U.S. Time.   10:00 am – Dr. Robert Franklin Welcome to the University of Cincinnati! Information will be shared about the UC clinic, staff, specialists...
New ECD Care Center Welcomed in Gainesville Florida

New ECD Care Center Welcomed in Gainesville Florida

June 3, 2022 –  The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida. The Erdheim-Chester Disease (ECD) Global Alliance is proud to announce a new emerging ECD Referral Care...
The Importance of Volunteer Support

The Importance of Volunteer Support

    The ECD Global Alliance (ECDGA), a non-profit dedicated to supporting people affected by an ultra-rare blood cancer known as Erdheim-Chester Disease (ECD), honors deserving volunteers during National Volunteer Week. ECDGA volunteers are the life force of...
Rare Disease Day 2022

Rare Disease Day 2022

Rare Disease Day is on February 28, 2022!  In the United States, a disease is considered rare if it affects fewer than 200,000 Americans, 7,000 illnesses fall into this category, with 1 in 10 Americans being affected. Patients that have a rare disorder...
Uplifting Athletes Awards ECD Global Alliance Investigator Nominee

Uplifting Athletes Awards ECD Global Alliance Investigator Nominee

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,...