ECD may be rare, but no one has to face it alone. Across the world, patients, caregivers, physicians, researchers, volunteers, and advocates are working together to build a stronger future for everyone affected by ECD. Distance may separate us, but our community...
One person learning about ECD may not seem like much. But one conversation can lead to an earlier diagnosis. One shared post can reach someone searching for answers. One moment of awareness can change a life. Every person who learns about ECD helps make our rare...
You don’t have to be a scientist or a doctor to make an impact. You can help by: Sharing information about ECD. Supporting ECD Global Alliance. Listening to patient stories. Encouraging others to learn about rare diseases. Speaking up for those living with ECD....
We’re excited to announce that the 12th Annual Erdheim-Chester Disease Patient & Family Gathering will be held in Glasgow, Scotland, on August 27 and 28, 2027! Join patients, caregivers, family members, and friends from around the world for two days of...
