The Erdheim-Chester Disease Global Alliance (ECDGA) is thrilled to announce the 2025 Global Steps Towards Awareness & Hope Virtual Fun Run, Walk & Roll! From June 16 through July 15, 2025, we invite YOU—patients, caregivers, supporters, and advocates around the world—to join our united movement of strength, visibility, and hope. This fully virtual event is your opportunity to raise awareness of ...

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Patient Information

ECD Overview

Care Centers

Patient Resources

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Our goal is to empower those affected by Erdheim-Chester Disease with knowledge and support. Here, you’ll find reliable information about ECD, treatment options, managing symptoms, and connecting with specialists. Explore resources tailored to help patients and families navigate their journey with confidence and hope.

Family/Caregiver Information

ECD Overview

Family/Carer Resources

Caregiver Connect

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Caring for someone with Erdheim-Chester Disease can be challenging, but you’re not alone. Our resources are designed to provide guidance, emotional support, and practical tools to help caregivers navigate this journey. Learn about ECD, connect with support networks, and discover strategies to care for your loved one while also taking care of yourself.

Medical Professionals

ECD Overview

Care Centers

Medical Resources

Studies & Trials

Find tools and information to support your work with ECD patients. Access up-to-date clinical guidelines, medical specialty insights, and research funding opportunities. Our resources are crafted to empower healthcare providers to deliver the best possible care and improved outcomes for those living with Erdheim-Chester Disease.

Funding & Research

Research Funding

Previous Grants Awarded

Studies & Trials

Registries & Surveys

Discover funding opportunities to support research and initiatives to learn more about Erdheim-Chester Disease to improve patient and caregiver outcomes. Explore open clinical studies for ECD patients.

Community Activities

Community Chats

Community Events

Webinars Connect

Caregiver Connect

Together, we’re making a real impact in the fight against Erdheim-Chester Disease. Explore the achievements made possible through the dedication and generosity of our community, from advancing research and improving patient care to fostering global connections and support. See how your involvement drives meaningful change and inspires hope for those affected by ECD.

Awards

Grant Opportunities

Past Grants Awarded

Nominate for Award

Past Awards

The ECD Global Alliance has been funding Erdheim-Chester Disease research since it was first given a 501(c)3 status in 2010 (retroactive back to 2009). The organization typically awards a young investigator grant yearly in the amount of $50,000 – $60,000. As possible, the organization also funds larger projects such as the establishment of the ECD Patient Registry, Survivorship Studies, and an investigation into the origin of ECD.

Announcements

A network of ECD Care Centers is available to help patients find knowledgeable doctors to confirm a diagnosis and to provide treatments and ongoing care. These institutions are committed to having a team of specialists available to provide the best care to ECD patients. Additionally, there are ongoing ECD trials/studies that are currently accepting ECD patients. Contact our Patient Navigator for more information.