Traveling can be exciting—but for individuals living with Erdheim-Chester Disease (ECD), it can also come with added considerations. Whether you’re attending your very first ECDGA Patient & Family Gathering or returning to reconnect with the community, preparing...
Every voice matters in the journey toward better understanding and treating Erdheim-Chester Disease (ECD).Whether you’re newly diagnosed, caring for a loved one, or simply looking to make a difference, there are powerful ways to get involved through the...
An Introduction for Those Newly Diagnosed If you or a loved one has recently received a diagnosis of Erdheim-Chester Disease (ECD), you may be feeling overwhelmed, confused, or even scared. That’s completely understandable. ECD is an ultra-rare condition, and most...
At the 10th Annual ECD Conference in Barcelona, something truly unique happens—patients, families, and medical experts come together in the same room, with a shared purpose: driving progress in the understanding, care, and treatment of Erdheim-Chester Disease (ECD)....
Erdheim-Chester Disease (ECD) is a complex and rare condition that can affect multiple organs and systems in the body. From the bones and heart to the kidneys and brain, ECD’s impact is often widespread. Because of this, a team-based, multidisciplinary approach to...
Fatigue is one of the most common—and often most frustrating—challenges faced by individuals living with Erdheim-Chester Disease (ECD). This isn’t just feeling tired at the end of a long day. Chronic fatigue associated with ECD can impact nearly every aspect of daily...
