After a day filled with knowledge, shared stories, and powerful conversations at the 2025 Patient & Family Gathering, the ECD Global Alliance invites all attendees to join us for a heartfelt and memorable Celebration Dinner—a time to pause, reflect, and honor the community that makes this journey more hopeful.

Held on the evening of May 26 at the beautiful Renaissance Barcelona Fira Hotel, this special gathering offers more than just a meal. It’s a chance to celebrate the strength and resilience of the global ECD community, forge deeper bonds, and take a moment to simply be together—no name tags, no lectures, just real connection.

A Celebration Rooted in Purpose

The Patient & Family Gathering is filled with moments of learning and discovery—but the Celebration Dinner is where hearts meet. This dinner is a time to recognize the courage it takes to live with or care for someone with Erdheim-Chester Disease. It’s a time to raise a glass to the researchers, caregivers, and patients who continue to move the field—and each other—forward.

You can expect a warm, welcoming atmosphere designed to nurture the emotional side of the ECD journey. Whether you’re attending for the first time or reconnecting with familiar faces, this dinner creates space for everyone to feel seen, appreciated, and supported.

What the Evening Will Include

• A Relaxed, Warm Setting – The dinner will take place in a comfortable space where casual conversation and meaningful connections can flourish. No formal dress code required—just come as you are.

• Reflections & Tributes – As part of the evening, there may be brief moments to honor the journey, remember those we’ve lost, and celebrate the progress the community has made together.

• Connection Without Agenda – The dinner is about people, not presentations. It’s a space to breathe deeply, enjoy a good meal, and simply connect without pressure or structure.

• Celebrating Small Wins – Living with ECD means embracing moments of joy wherever they come. The dinner is a reminder that, even in the midst of a difficult diagnosis, there is still so much worth celebrating.

Why This Night Matters

The ECDGA Celebration Dinner is more than a social event—it’s a meaningful tradition that reinforces the very heart of the organization: community, compassion, and connection. As the day winds down, this evening brings lightness to a heavy topic and allows attendees to carry the day’s inspiration into lasting relationships.

Whether you’ve made new friends, found new insights, or simply want to share a quiet smile with someone who understands—you’ll find a seat at this table.

Join Us in Barcelona

The ECD Global Alliance 2025 Patient & Family Gathering will take place on May 26 at the Renaissance Barcelona Fira Hotel. This event brings together patients, family members, carers, clinicians, researchers, and members of support organizations to share knowledge and experiences related to ECD diagnosis, treatment, and daily living. The Celebration Dinner will follow the day’s sessions, offering time to wind down, connect, and celebrate the power of unity.

We look forward to sharing this unforgettable evening with 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.