Finding Movement That Works for You Living with Erdheim-Chester disease (ECD) often means adjusting to changes in energy, mobility, balance, strength, or endurance. While every person’s experience is different, one thing remains true: movement matters. The good...
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....
In 2027, the ECD Global Alliance (ECDGA) and the Histiocyte Society (HS) will hold their first-ever joint annual meeting in Glasgow, Scotland, August 27–31, 2027. The planned schedule is: ECDGA Care Center Meeting & Patient Meet & Greet: August 27 ECDGA...
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...
Dear ECD Community, We are 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. Please mark your calendars and begin making plans to join patients, caregivers,...
Living with Erdheim-Chester Disease (ECD) often means paying close attention to your health. Between appointments, treatments, and the many demands of daily life, it can be easy to overlook one of the simplest wellness habits: staying hydrated. While hydration is...
