As you prepare to attend the 10th Annual Patient and Family Gathering hosted by the Erdheim-Chester Disease Global Alliance (ECDGA), we want to ensure you have all the practical information and context you need to feel confident and supported from the moment you arrive in Barcelona. This gathering is about more than just information—it’s about community, empowerment, and shared hope. From logistics to lodging to the day’s structure, here is what you can expect.
Arrival and Transportation
The primary lodging site for many attendees is the Renaissance Barcelona Fira Hotel, which will serve as the informal home base for ECDGA’s events throughout the week. On the morning of Monday, May 26, volunteers will be available in the hotel lobby from 7:00 to 7:45 AM to help escort attendees via Metro to the conference site at Bellvitge University Hospital. The journey is straightforward and takes approximately 10 minutes. For those who may have mobility considerations or prefer more direct transportation, taxis and rideshare services are readily available and encouraged.
If this is your first time navigating Barcelona’s transit, you’ll be supported. Volunteers are there to walk alongside you and answer questions along the way. Please don’t hesitate to ask for assistance—we are here to make sure your experience is smooth and stress-free.
Event Location: Bellvitge University Hospital
The Patient & Family Gathering will take place in the Main Building of Bellvitge University Hospital, on the Street Level in the Auditorium. Registration and a light breakfast will begin at 8:00 AM, and the program will run from 8:30 AM to 4:30 PM. Bellvitge is one of Spain’s leading institutions for rare diseases and is home to a designated ECD Care Center. Its team, led by Dr. Xavier Solanich, has played a pivotal role in both the planning of the event and the global research community.
Evening Celebration Dinner
After the full day of sessions and conversation, all attendees are invited to the ECD Global Alliance Celebration Dinner at the Palmer Restaurant, located on the 14th floor of the Renaissance Barcelona Fira. From 6:00 to 8:00 PM, we will gather to reflect on the day’s insights, strengthen friendships, and celebrate the community we continue to build together. It’s an evening filled with encouragement and connection, whether this is your first Gathering or your tenth.
Accessibility and Support
Whether you’re traveling solo or with loved ones, we want you to know you’re not alone. The ECDGA community is ready to welcome you with compassion and care. If you have questions about mobility access, dietary needs, or navigating the hospital, event volunteers and staff are prepared to assist. Your comfort and safety are our priority.
Why This Gathering Matters
The Patient and Family Gathering is not just an educational event—it’s a cornerstone of the ECDGA’s mission to unite individuals impacted by Erdheim-Chester Disease. This is where stories are shared, where complex medical topics become clearer, and where those living with ECD can hear directly from international experts. Equally important, it’s where lifelong friendships often begin.
We recognize that travel, new environments, and rare disease can all bring uncertainty. But know that you will be surrounded by people who understand, who care, and who are committed to walking this journey with you. Together, we are building not just knowledge—but also hope.
Please keep checking the ECDGA website for updates and final details. And if you need help before or during the event, reach out. We look forward to seeing you in Barcelona.