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 Erdheim-Chester Disease Global Alliance (ECDGA). From contributing to vital research and sharing your experiences in surveys, to attending global events and joining the patient registry, your participation helps fuel knowledge, connection, and hope for the entire ECD community.

1. Add Your Voice to the ECD Global Patient Registry

The ECD Patient Registry is more than a database—it’s a powerful tool that helps researchers better understand ECD. When you participate, you contribute to:

• Identifying trends in diagnosis and symptoms
• Improving patient care and outcomes
• Guiding future research priorities

It’s secure, confidential, and open to all ECD patients. The more diverse and complete our data, the better we can advocate for faster diagnoses, better treatments, and stronger support systems.

Join the patient registry today.

2. Support Research That Puts Survivors First: UAB Survivorship Study

If you’re a patient in the United States or Canada, you may be eligible to participate in the University of Alabama at Birmingham (UAB) Survivorship Study. This important project is focused on understanding the long-term impact of ECD and how we can improve the quality of life for survivors.

By joining this study, you’ll help researchers:

• Identify gaps in care
• Understand the emotional and physical experiences of ECD survivors
• Design better survivorship programs

Participation is voluntary and remote. All that’s required is your time, perspective, and a willingness to share your experience for the benefit of others.

If you are a patient living in the US or Canada and Interested in the UAB Survivorship Study, but have not previously registered, please contact Belinda Cobb to let her know of your interest.

3. Share Your Input in Community Surveys

Throughout the year, ECDGA shares short surveys to better understand the needs of our community—topics range from access to care and treatment experiences to daily life challenges and event preferences. These insights help us:

• Improve event programming
• Guide advocacy efforts
• Inform healthcare providers and researchers

When you take part, you help ensure our programs reflect what matters most to you.

4. Attend ECDGA Events—In Person or Online

Our Patient & Family Gathering and Medical Symposium are held annually, offering opportunities for education, connection, and support. These events bring together patients, families, researchers, and physicians from around the world.

The next Gathering will be held on May 26, 2025, in Barcelona, Spain, and is open to everyone affected by ECD. You don’t have to go it alone—when we gather, we grow stronger.

Can’t travel? Many sessions are recorded or livestreamed so that everyone has access to expert guidance and community support.

Learn more about the Barcelona Meeting.

5. Volunteer or Advocate

Your experience has power. Consider:

• Becoming a peer support volunteer
• Sharing your story for our blog or newsletter
• Fundraising on behalf of ECDGA
• Advocating in your local medical community

No matter how big or small your gesture, it creates a ripple effect of awareness and hope.

Want to volunteer? 

Get Involved. Stay Connected. Make an Impact.

Your participation today helps build a better tomorrow for everyone affected by Erdheim-Chester Disease. Whether you fill out a survey, register for an event, or join a study, you are helping us move forward together.

So go ahead—join the conversation. Your voice matters more than you know.

The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.