rare connect
Meet Some of the World’s Leading ECD Experts Joining Us in Barcelona
The ECD Global Alliance 2025 Patient & Family Gathering, happening on May 26 in Barcelona, Spain, is more than just a chance to connect—it’s a rare opportunity to learn directly from the doctors shaping the future of Erdheim-Chester Disease (ECD) care and research.
This year’s lineup includes internationally recognized physicians and researchers who have not only treated ECD patients but have also contributed to groundbreaking discoveries that are helping improve lives. Here’s a quick introduction to just a few of the expert voices you’ll hear from at this year’s event.
Dr. Juvianee Estrada-Veras
National Institutes of Health (NIH), USA
Dr. Juvianee Estrada-Veras is widely recognized for her expertise in rare histiocytic disorders, including Erdheim-Chester Disease. Based at the National Institutes of Health, she has led and collaborated on multiple clinical studies that aim to better understand the disease and its treatment options.
Dr. Estrada-Veras is known for her compassionate approach to care and her strong commitment to patient-centered research. She has been a trusted voice in the ECD community for years, bringing clarity to complex medical topics and helping patients and families understand what’s possible.
Dr. Julien Haroche
Pitié-Salpêtrière Hospital, Paris, France
One of the most prolific researchers in the field of ECD, Dr. Julien Haroche is based at Pitié-Salpêtrière Hospital, one of Europe’s leading institutions for rare diseases. His name appears on numerous key studies that have helped shape what we know about ECD today—especially the role of genetic mutations like BRAFV600E and the use of targeted therapies.
Dr. Haroche’s work has helped redefine ECD as an inflammatory myeloid neoplasm, a shift that has opened doors to more precise diagnostics and treatment options. Attendees will benefit from his deep clinical knowledge and his ability to explain the evolving science behind ECD in a way that is clear and approachable.
Dr. Eli Diamond
Memorial Sloan Kettering Cancer Center (MSKCC), USA
Dr. Eli Diamond is a neurologist and physician-scientist at Memorial Sloan Kettering Cancer Center, one of the foremost cancer centers in the world. He specializes in the neurological manifestations of histiocytic diseases like ECD, including the brain and central nervous system—areas that can often be difficult to understand and manage.
In addition to his clinical work, Dr. Diamond has authored numerous publications and contributed to consensus guidelines that have helped standardize ECD diagnosis and care. He is a valued educator and a powerful advocate for patients navigating the uncertainty of rare disease symptoms.
What to Expect from These Expert Sessions
At the Gathering, these doctors—and many others—will lead sessions designed specifically for patients and caregivers. You’ll hear updates on the latest research, learn about disease mechanisms and potential treatments, and gain a clearer understanding of how ECD is being managed today around the world.
But perhaps most importantly, you’ll be able to ask questions, share your experiences, and engage directly with people who have dedicated their lives to understanding this disease. That kind of access is rare—and incredibly meaningful.
Bringing the Global ECD Community Together
The ECDGA has always believed in the power of connection—not just between patients and families, but between those affected and those searching for answers in the lab and clinic. By hosting events like the Patient & Family Gathering, we bridge those worlds and create a space where knowledge flows freely and support is felt deeply.
The participation of doctors like Dr. Estrada-Veras, Dr. Haroche, and Dr. Diamond reminds us that we’re not alone. These experts are listening, learning, and working alongside us to bring about better outcomes, faster diagnoses, and ultimately, hope.
We can’t wait to welcome you to Barcelona on May 26, where expert voices, patient stories, and global support will come together in a truly unforgettable way.
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.
