When you or someone you love is living with Erdheim-Chester Disease (ECD), it’s natural to seek answers, hope, and direction. That’s exactly what the ECDGA Medical Symposium is all about. While it’s a professional gathering for researchers and clinicians, the impact of this event is deeply personal—because what’s discussed there ultimately affects your care, your options, and your future.

From May 26–28, 2025, medical professionals from around the world will gather in Barcelona, Spain, for the ECD Global Alliance’s annual Medical Symposium. And while you may not be attending the scientific sessions yourself, the knowledge shared during these three days will shape the next steps in understanding, diagnosing, and treating ECD.

What Is the Medical Symposium?

The ECDGA Medical Symposium is the only international meeting focused exclusively on ECD, bringing together a wide range of specialists—oncologists, hematologists, neurologists, pathologists, and more—who share one mission: to improve outcomes for people living with ECD.

Here’s what they’ll be doing in Barcelona:

• Sharing new research findings

• Discussing real-world patient case studies

• Reviewing outcomes from clinical trials

• Exploring emerging treatment approaches

• Collaborating on ways to improve care worldwide

This exchange of ideas doesn’t just stay within the meeting rooms. It translates into better experiences and options for you.

Why It Matters to You

You may not be reading medical journals or conducting research, but the work that happens at the Symposium directly affects your journey with ECD. Here’s how:

• Faster, More Accurate Diagnoses
  When doctors are better informed about how ECD presents in the body, they’re more likely to recognize it early and reduce delays in getting you answers.

• Access to New Treatments
  Many therapies now used to manage ECD began as presentations at this very Symposium. Discussions here may lead to clinical trials or new treatment protocols that could soon be available to you.

• A More Coordinated Approach to Care
  Multidisciplinary collaboration helps ensure that ECD care is not fragmented, but integrated. That means your team of doctors—from neurology to endocrinology—can work together more effectively.

• Hope Through Progress
  Knowing that the world’s top ECD experts are actively working, sharing, and pushing forward brings a vital message: you are not alone, and better days are ahead.

Your Story Fuels the Science

The studies and case presentations shared at the Symposium often come from real-world data—your experiences, your outcomes, and your voices. Through patient registries, support groups, and partnerships with care centers, the ECDGA ensures that the lived experience is always part of the research conversation.

When researchers better understand your needs, they can ask better questions. And better questions lead to better answers.

From the Lab to Your Life

The benefits of the Medical Symposium don’t end when the event does. You’ll feel its impact through:

• New information your doctor may receive

• Updated treatment guidelines

• More awareness among specialists worldwide

• Better collaboration between ECD Care Centers

• Expanded opportunities to participate in research

You may even hear Symposium highlights at the Patient & Family Gathering, where many of the same doctors will present directly to the community—bridging science and support in ways that truly matter.

Looking Ahead

The 2025 ECDGA Medical Symposium isn’t just a meeting for scientists—it’s a powerful step forward in improving the care, understanding, and outcomes for those affected by Erdheim-Chester Disease. Everything shared, every collaboration started, and every discovery made is one more way we’re working toward a better tomorrow—for you.

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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.