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 an opportunity to engage with the newest research findings, from foundational science to practical clinical discussions on diagnosis, treatment, and patient 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.
In 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) proudly honored individuals whose extraordinary contributions advanced awareness, research, care, and community support for those affected by Erdheim-Chester Disease. At the annual Patient & Family Gathering in Barcelona, Professor Julien Haroche, MD, PhD received the Mark Heaney Award as a leading voice to help the medical world understand and identify ECD. Father Charles Balnaves was recognized as the ECDGA Community Champion for his compassionate advocacy and unwavering dedication in supporting the annual ECD Patient & Family Gathering, while Dr. Laura Eurelings, MD, PhD earned the Junior Investigator Award for her promising and impactful research presentations. The Alliance also honored Xavier Solanich with the Host Award in recognition of his outstanding hospitality, leadership, and commitment in helping make the 2025 gathering a meaningful and welcoming experience for all. Together, these awardees exemplify the spirit of collaboration, service, and hope that drives the global ECD community forward.
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 is now available in 12 languages, reflecting our ongoing commitment to making reliable, relevant information accessible to people around the world impacted by Erdheim-Chester Disease. From improved access to educational resources to simplified event registration and timely 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.
ECD medical experts from our community have helped develop two types of educational brochures to support awareness and understanding of Erdheim-Chester Disease. The Patient Brochure is designed to help individuals who are newly diagnosed—or new to the ECD community—understand the basics of the disease in a clear and accessible way. The Medical Brochure is intended to be shared with care teams and healthcare professionals, providing concise, reliable information to support informed clinical care. To better serve our global community, the Patient Brochure is currently available in five languages, helping ensure essential information is accessible to patients and families around the world.
Each month, the Erdheim-Chester Disease Global Alliance (ECDGA) hosts webinars created with patients and caregivers in mind. These sessions offer an opportunity to learn directly from ECD experts, hear about the latest research and care approaches, and better understand how to navigate life with Erdheim-Chester Disease. Just as importantly, the webinars provide a space for patients and families to connect, ask questions, and feel less alone. Offered in multiple languages, these monthly programs help ensure that individuals around the world can access trusted information, support, and community—no matter where they live or what language they speak.
We brought ECD into new medical spaces—and invited patients to shape the future.
At the American Society of Hematology (ASH) conference in Orlando and the American College of Rheumatology (ACR) conference in Chicago, ECDGA staff took the opportunity to engage directly with medical professionals about Erdheim-Chester Disease. These types of in-person conversations with hematology and rheumatology specialists are critical to increasing awareness of ECD, helping more physicians recognize the disease when they encounter it, speeding up diagnosis, and ultimately improving patient 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.
Care Center Expansion
In 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) continued to expand its global Care Center network, strengthening access to expert, multidisciplinary care for individuals living with Erdheim-Chester Disease. This year marked the addition of two important Care Centers in England, further advancing ECDGA’s mission to ensure regional access to knowledgeable providers. ECDGA proudly welcomed Nottingham University Hospitals NHS Trust as a newly designated Care Center, led by Dr. Mark Bishton, whose clinical expertise and commitment to rare disease care will provide vital support to patients across the UK and beyond. In addition, University College London Hospitals (UCLH) in London was recognized as a Full Referral Care Center under the leadership of Dr. Satyen Gohil of the Department of Hematology. As the 42nd ECD Care Center worldwide and the third in England, UCLH brings valuable experience in the diagnosis and management of ECD, expanding options for expert consultation and care. Together, these additions reflect ECDGA’s ongoing commitment to improving diagnostic pathways, coordinating specialized care, and supporting better outcomes for the global ECD community.
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.