When someone first hears the words Erdheim-Chester Disease (ECD), it can feel like stepping into unfamiliar territory—an ultra-rare diagnosis that most have never encountered. But from the very beginning, one thing the ECD community makes clear is this: you are not alone.

Behind the digital spaces where patients, caregivers, and grieving family members come together are the quiet heroes who make it all possible—our volunteer chat moderators. These compassionate individuals give their time, heart, and experience to foster safe, supportive environments across the globe. As we honor Volunteer Month this April, we shine a light on the moderators who help our community feel connected, informed, and embraced.

Building Safe Spaces Around the World

Every month, the ECDGA hosts a variety of virtual chats for different segments of the community—caregivers, patients, those navigating grief, and even country-specific groups held in different languages. These chats aren’t just routine Zoom calls; they’re lifelines for many.

Our volunteers offer more than time—they offer understanding, empathy, and a listening ear from someone who gets it. Whether you’re a newly diagnosed patient in Germany or a caregiver in Canada navigating the emotional toll of rare disease care, there’s a space where your voice can be heard—and someone there to guide the conversation.

These spaces are moderated with care by a truly global team:

• Caregiver Chat: David Long, Edward Shirley, M.D., Doug Boone, Julie Jones

• Grief Chat: David Long

• French Chat: Pascale Eleonore Baugnet

• Spanish Chat: Ana Valdez, Elaine Sanchez

• German Chat: Timo Steuerwald

• Italian Chat: Mariangela Melino

• Canadian Chat: Edith Watters

• Australian/New Zealand Chat: Sarah Bishop, Stephen Morris

This international lineup reflects not only the reach of the ECDGA community but also its diversity and commitment to inclusivity.

Volunteers Who Know the Journey

What sets these moderators apart isn’t just their dedication—it’s their lived experience. Many are caregivers themselves. Some are medical professionals touched by ECD in personal ways. Others have walked through the stages of loss and now offer a compassionate presence to others doing the same.

Each brings their unique perspective to the chat room, turning it into a circle of trust. They guide difficult conversations, celebrate small victories, and remind participants that their feelings are valid. They are the heartbeat behind every meeting—the reason these sessions are not only informative, but transformative.

Behind the Screen, A Real Impact

It’s easy to overlook the power of peer-to-peer support in a world dominated by medical appointments, lab results, and emerging treatments. But emotional and mental well-being are just as vital to the rare disease journey. When someone shares their story and hears a voice say, “I understand,” healing begins in a whole new way.

Volunteers often prepare materials ahead of each chat, follow up with participants, and create continuity between meetings so newcomers feel welcomed and returning members feel seen. And they do all this while managing their own lives, families, and often, their own ECD-related journeys.

A Community Preparing for Connection in Barcelona

As we celebrate our moderators this month, we also look ahead to the upcoming ECD Patient and Family Gathering and Medical Symposium in May—this year hosted in beautiful Barcelona, Spain. Many of the chat moderators will be present, offering the unique opportunity to connect in person with those we’ve only known through screens and voices.

These gatherings are a powerful reminder of what makes the ECDGA community so extraordinary: the people. The volunteers. The voices who step forward not because they have to, but because they want to—because they care.

Barcelona will be more than a conference. It will be a reunion. A chance to give our volunteers a long overdue “thank you” in person. A space to celebrate the strength and resilience of a community shaped by kindness and service.

Join Us in Saying Thank You

This Volunteer Month, we invite you to join us in celebrating these incredible individuals. Reach out in your next chat, send a note of appreciation, or simply show up to a session with your camera on and your heart open. Our moderators give so much of themselves—let’s return the favor by recognizing their impact.

Because when you peel back the layers of research, advocacy, and support, the true foundation of our work is always the people behind it.

And at ECDGA, that foundation is strong, because it’s built by volunteers.

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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.