Your Support Brings Hope!

Make a difference!

Donate

Join Us For A Chat!

Coming together as a community.

Join Us Today

Together We Are Strong!

ECD Global Alliance – Providing Support!

Join Us Today

Research & Collaboration

Join the movement and bring breakthroughs.

Learn More

Care is Available

Learn about Care Centers

Find A Care Center

Events

12th Annual ECD Medical Symposium – Glasgow, Scotland 2027

We are excited to announce that the 12th Annual ECDGA Medical Symposium will be held in Glasgow, Scotland in August...

Read More $

12th Annual ECD Patient & Family Gathering – Glasgow, Scotland 2027

We are excited to announce that the 12th Annual ECDGA Patient and Family Gathering will be held in Glasgow, Scotland...

Read More $

News

One Family’s Search for Answers Became a Community

Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came...

Read More $

Introducing Mary Burgin Executive Director Erdheim-Chester Disease Global Alliance

“We are excited to welcome Mary as our new Executive Director and look forward to the energy, experience, and passion...

Read More $

Patient Information

ECD Overview
Patient Resources

Care Centers
Request Brochure

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
Caregiver Connect

Family Resources
Request Brochure

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
Medical Resources

Care Centers
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
Studies & Trials

Previous Grants
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.

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.

Contact Our Patient Navigator →