rare connect
Living with Erdheim-Chester Disease (ECD) is not just a medical journey—it’s an emotional and psychological one, too. That’s why the ECD Global Alliance is putting mental health, wellness, and survivorship front and center at the upcoming 2025 Patient & Family Gathering, taking place on May 26 in Barcelona, Spain.
While the Gathering is known for delivering world-class medical updates and access to ECD experts, it’s also a space for addressing the often unspoken challenges of living with a rare disease: the fatigue, the anxiety, the unknowns, and the emotional toll on both patients and caregivers.
This year, we’re dedicating intentional time to focus on these vital, human aspects of living with ECD—because true care means seeing the whole person, not just the diagnosis.
Why Mental Health and Wellness Matter
A rare disease like ECD can affect more than just the body. From the uncertainty of diagnosis to the complexity of symptoms and treatments, many patients and caregivers experience:
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Chronic fatigue and brain fog
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Anxiety about the future
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Depression or isolation
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Grief after life-changing health events
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Caregiver stress and burnout
These experiences are real—and valid. At the Gathering, we’re creating a space where these conversations are not only welcomed, but prioritized.
What to Expect at the Gathering
During the Barcelona event, attendees will have the opportunity to attend wellness-focused sessions that explore topics such as:
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Mental Health & Coping Strategies – Led by professionals who understand rare disease trauma, this session will address the emotional impact of ECD and provide tools for navigating fear, grief, and uncertainty.
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Managing Fatigue & Brain Fog – A practical session focused on understanding and managing ECD-related fatigue and cognitive effects, with strategies that can help improve quality of life.
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The Caregiver Experience – This discussion will offer validation and support for those caring for loved ones with ECD, along with resources to help manage stress and emotional well-being.
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Survivorship & Resilience – Featuring stories of long-term ECD warriors, this session will explore what it means to live beyond diagnosis and build a meaningful life despite challenges.
These sessions are designed to equip attendees not just with knowledge, but with hope, validation, and community.
Whole-Person Care Begins with Conversations
The medical journey with ECD can be long and uncertain. But emotional and mental wellness are just as important as lab results and scans. By integrating these topics into the core of our Gathering, we hope to affirm something essential: you are more than your illness.
Our mission is not just to educate—it’s to support. And support means holding space for every part of the journey, from the physical to the emotional, from the science to the soul.
Why This Gathering Is Different
The 2025 Patient & Family Gathering will be held at the Renaissance Barcelona Fira Hotel, a welcoming and beautiful space that reflects our goal of creating comfort, connection, and clarity. The event will bring 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.
There will be time for learning, time for sharing, and time for connecting with others who understand the unique road you’re on. We hope everyone leaves feeling more informed—and more hopeful—for the road ahead.
We invite you to join us in Barcelona on May 26—not just to hear from experts, but to find support, share your voice, and renew your spirit among others who truly understand.
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.
