The Patient and Family Gathering is one of the most anticipated events of the year for the Erdheim-Chester Disease community. Each session is carefully selected to offer insight, clarity, and support for individuals living with ECD and the loved ones who stand beside them. Whether you’re newly diagnosed or years into your journey, this day offers a rare opportunity to hear directly from global leaders in histiocytosis research and care.
Here’s a look at what to expect during the Monday, May 26 event—and why each moment has been intentionally designed with you in mind.
Morning Overview: Foundational Knowledge and Expert Perspectives
After checking in and enjoying a light breakfast beginning at 8:00 AM, the program will officially open at 8:30 AMwith a welcome from our emcees, Dr. Xavier Solanich and Dr. Juvianee Estrada-Veras. As hosts and members of the ECDGA Medical Advisory Board, they’ll provide an overview of the day, introduce the hospital, and speak to the significance of bringing the community together in Barcelona.
From there, attendees will embark on a series of expert-led sessions focused on foundational and scientific insights, including:
- Overview of Adult Histiocytosis
Led by Dr. Gaurav Goyal, this session will explore how Erdheim-Chester Disease fits within the broader category of histiocytic disorders and what recent discoveries suggest about their similarities and distinctions. - Biology of ECD & Current Basic Science Research
Dr. Oshrat Hershkovitz-Rokah will guide us through the complex biology of ECD, with a focus on the role of gene mutations and epigenetics. This session is essential for anyone interested in how scientific research translates into new treatment possibilities. - ECD Treatment Options (Current & On the Horizon)
One of the most anticipated presentations of the day, this talk by Dr. Julien Haroche will outline how current treatments are selected and administered, and what’s emerging in the global pipeline. - Treatment Side Effects & Clinical Manifestations
With presentations from hospital pharmacist Pol Cleries Rovira and physician Dr. Jerome Razanamahery, these sessions will explain what patients can expect from their treatment plans, how to recognize side effects, and how the disease may present across different parts of the body. - Brain and Eye Involvement
Dr. Eli Diamond will offer a focused session on neurologic and ocular symptoms of ECD—topics that are among the most difficult for patients and caregivers to navigate.
This entire first half of the day is designed to provide a full-circle view of what ECD is, how it behaves, and how it can be managed.
Afternoon Sessions: Living with ECD
After a midday break and group photo, attendees will return for an afternoon focused on living with ECD—not just medically, but emotionally, physically, and practically. Afternoon topics include:
- Concomitant Diseases
Dr. Francesco Pegoraro will explore other hematologic or systemic conditions that may occur alongside ECD and how care may be adapted as a result. - Expert Q&A Panel
This interactive hour allows attendees to ask general questions of a panel made up of top ECD researchers and physicians. It’s one of the most valued sessions by past attendees because it brings together many perspectives and encourages open discussion. Personal medical advice cannot be provided, but attendees are encouraged to ask broader questions relevant to the community. - Mental and Emotional Health for Patients and Caregivers
Led by Laia Ferrer, this important session is a reminder that treating ECD isn’t just about medicine. It’s also about managing fear, anxiety, and the burden of uncertainty. - Pain and Fatigue Management, Staying Active, and Eating Healthy
A series of lifestyle-focused talks from Drs. Montserrat Olmo Plaza, Mariona Violán, and Rafael Lopez Urdiales will offer suggestions and evidence-based insights on navigating common ECD-related challenges with practical tools. - ECD Survivorship Management: Q&A Panel
The final panel of the day brings together multiple specialists to discuss long-term survivorship issues—what to expect, how to stay monitored, and how to live with ECD as part of your life, not the center of it.
The day will close with remarks from Diane Schriner of the ECDGA Board of Directors, followed by an attendee evaluation to help shape future gatherings.
A Day Designed for You
This agenda was not designed in a vacuum. It reflects feedback from past attendees and the guidance of ECD experts around the globe. Every speaker, every panelist, and every volunteer is here because they believe in the power of this community to learn, support, and grow together.
For many attendees, this day has brought the comfort of being understood for the first time. For others, it has sparked research ideas, new medical conversations, or lifelong friendships. Whatever this day becomes for you, we are honored to be part of it.
If you are attending and have questions in advance about logistics, sessions, or accommodations, the ECDGA team is here to help. Let us walk beside you—because no one should navigate this rare disease alone.