A look back at the moments, milestones, and messages you may have missed.
As 2025 comes to a close, we’re taking a moment to look back at a year that brought connection, education, progress, and support to the ECD community around the world. Whether you’ve been closely following our updates or life got in the way (we get it), here’s your chance to catch up on everything that made this year meaningful.
We gathered in Barcelona, and the impact reached far beyond the room.
One of the most powerful moments of 2025 was our 10th Annual Patient and Family Gathering and Medical Symposium, held in beautiful Barcelona, Spain. For patients and caregivers, it was a day of insight and shared experience. For researchers and physicians, it was a deep dive into the latest developments in diagnosis, treatment, and care.
Couldn’t make it in person? You can still watch every session on-demand — from expert Q&As and research updates to moving patient stories. We also published both the Patient & Family Gathering Agenda and the Medical Symposium Agenda, offering a full look at the topics covered.
One of the highlights from the symposium was the recognition of Laura Eurelings, MD, PhD with this year’s Junior Investigator Award, honoring her contributions to ECD research and care. Her work is a reminder of how far the science has come—and how far it can still go.
We launched a new website—designed with you in mind.
One of the most exciting behind-the-scenes milestones this year was the launch of our completely redesigned website. If you haven’t seen it yet, now is a great time to explore the new erdheim-chester.org. Built to be faster, easier to navigate, and more accessible, the new site reflects our ongoing commitment to making reliable, relevant information available to everyone impacted by Erdheim-Chester Disease. From improved access to educational resources, to simplified event registration and news updates, every element was redesigned to better serve our growing global community. We hope it helps you find what you need—whether that’s answers, connection, or support.
We walked, we ran, and we rolled—for hope, and for each other.
2025 was also a banner year for community-powered fundraising. Our annual virtual “Run, Walk & Roll for Hope” was not only a success—it exceeded expectations. In this recap, we celebrated the incredible effort of every participant, donor, and team leader.
If you ever wondered whether building a fundraising team really makes a difference, our piece on “Stronger Together” showed exactly how multiplying your voice can amplify your impact. As the year wound down, we saw the energy continue in our final fundraising push. You helped push that thermometer higher and higher, and when we said “We’re so close”—you showed up.
To close the year, we launched our End-of-Year Giving Campaign with a powerful match: every gift doubled. Each dollar went directly toward supporting ECD research, awareness, and community services.
We shared stories, spread awareness, and invited others in.
This fall, we hosted another successful ECD Awareness Week, running from September 8–14. Whether you wore your ribbon, shared a story, or talked to someone new about ECD, you played a role in making this rare disease just a little more visible.
In keeping with that spirit of openness, Ziggy the Zebra made a return to talk about the importance of staying connected. Whether through online chats, support groups, or local meetups, that message hit home: community matters. The Canada Monthly Chat even featured a special guest this year, reminding us that every conversation counts—especially when it comes from someone who understands what you’re going through.
We also published holiday season guidance to support patients and families navigating the unique emotional and physical challenges of this time of year.
We brought ECD into new medical spaces—and invited patients to shape the future.
At the American Society of Hematology (ASH) conference in Orlando, ECDGA staff took the opportunity to talk directly with hematology professionals about Erdheim-Chester Disease. These types of engagements are crucial to ensuring that more doctors recognize ECD when they see it, speeding up diagnosis and improving care.
At the same time, we invited patients to participate in research from the other side of the table. In this call for participants, English-speaking ECD patients were invited to take part in studies focused on lived experience, helping shape future research priorities.
We looked ahead—and you’re already invited.
If 2025 was any indication, 2026 is going to be just as impactful.
We’ve already opened registration for the 2026 Patient and Family Gathering and Medical Symposium in Birmingham, Alabama. And if you’re a researcher or clinician, don’t forget that abstract submissions are due by February 1.
We can’t say it enough: thank you.
This year was full of meaningful moments—because of you. Whether you gave, participated, showed up, reached out, or just read along quietly, you are part of this movement. You’re helping us raise awareness, support families, and push research forward in a disease that, for too long, went unseen.
If you missed any of the posts linked above, we invite you to revisit them. Every story shared, every effort celebrated, and every event held is part of a larger picture: one of progress, community, and enduring hope.
On behalf of the entire team at the Erdheim-Chester Disease Global Alliance, thank you for being with us in 2025. Here’s to continuing the work, together, in 2026.
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.