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For over 15 years, the Erdheim-Chester Disease Global Alliance (ECDGA) has been a beacon of hope for patients, families, and researchers dedicated to understanding and treating Erdheim-Chester Disease (ECD). Since our founding in 2009, we have supported more than 1,000 families worldwide, funded groundbreaking research initiatives, and built a global community united by one mission: advancing awareness, education, and research for ECD.

Our work is fueled by the passion and commitment of patients, caregivers, doctors, researchers, donors, and volunteers who refuse to let rare disease challenges go unanswered. The ECD community has come together to drive significant progress in genetic discoveries, new treatment options, and patient care improvements—but there is still more to be done.

Every step forward is made possible by the dedication of those who get involved. Whether you contribute through donations, volunteering, advocacy, or simply spreading awareness, you play a vital role in shaping the future of ECD research and support.

Join us in making a difference. Together, we are stronger.

Learn how you can help: Get Involved