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For those living with Erdheim-Chester Disease (ECD) and their loved ones, finding a supportive community and reliable medical insights can make all the difference. The ECD Patient & Family Gathering is designed to connect, educate, and empower individuals affected by this rare disease.

A Unique Opportunity to Learn and Connect

The Patient & Family Gathering brings together ECD patients, caregivers, and world-renowned medical experts. Attendees gain access to up-to-date research, insights on disease management, and the chance to ask direct questions to specialists who are leading the way in ECD care.

What to Expect at the Event

• Presentations by ECD Experts– Physicians and researchers will share the latest advancements in ECD, including disease biology, current treatments, and ongoing clinical trials.
• Interactive Q&A Sessions– Attendees can engage directly with medical professionals to get their most pressing questions answered.
• Topics Covering All Aspects of Life with ECD– Discussions will include symptom management, treatment options, mental health strategies, and the impact of ECD on daily life.
• Community Support & Networking– One of the most valuable aspects of the gathering is the opportunity to connect with others who truly understand the challenges of living with ECD.

Why This Event Matters

The journey with ECD can often feel isolating, but the Patient & Family Gathering reminds attendees that they are not alone. The event fosters a sense of community, providing both emotional support and vital information that can improve quality of life.

Preparing for the Gathering

If you’re planning to attend, consider preparing a list of questions in advance. Come ready to engage, share experiences, and build lasting connections within the ECD community.

By participating in events like the Patient & Family Gathering, patients and caregivers become part of a global network working to improve outcomes, raise awareness, and support research efforts.

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.