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When living with a rare condition like Erdheim-Chester Disease (ECD), daily choices—like what’s on your plate—can make a meaningful difference in how you feel. erdheim-chester.org/food-for-thoug…

Managing Erdheim-Chester disease: the efficacy of MEK inhibitors in this rare disease youtu.be/H2v4dkzyBV0?si…

Raising awareness for a rare disease like Erdheim-Chester Disease (ECD) takes more than facts and figures—it takes people. It takes passion, imagination, and community spirit. erdheim-chester.org/fundraising-wi…

Progress in Erdheim-Chester Disease (ECD) doesn’t happen in isolation. It’s made possible through collaboration among scientists, clinicians, and the patients and families who push forward despite the unknowns. erdheim-chester.org/guiding-ecd-fo…

Why Early Diagnosis Matters in Erdheim-Chester Disease: Marc’s Story - Being diagnosed with a rare disease like Erdheim-Chester Disease (ECD) can be overwhelming. erdheim-chester.org/why-early-diag…

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 ... erdheim-chester.org/what-to-expect…

The Erdheim-Chester Disease Global Alliance (ECDGA) welcomes medical professionals from around the world to the 2025 Annual Medical Symposium on Erdheim-Chester Disease, held in Barcelona at Bellvitge University Hospital. erdheim-chester.org/what-to-expect…

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 .. erdheim-chester.org/understanding-…

In the world of Erdheim-Chester Disease (ECD), few names are more widely respected than Dr. Julien Haroche. For more than two decades, Dr. Haroche has led groundbreaking research in histiocytosis, particularly ECD. erdheim-chester.org/session-highli…

Each year, the Erdheim-Chester Disease Global Alliance (ECDGA) hosts a singular event that brings together physicians, researchers, and care specialists from across disciplines and across borders. erdheim-chester.org/collaboration-…

As Erdheim-Chester Disease (ECD) becomes more recognized and understood within the medical community, a new challenge is emerging: what happens when a patient’s symptoms don’t follow a predictable pattern, or worse, when ECD isn’t the only condition ... erdheim-chester.org/keynote-spotli…

The ECDGA staff and volunteers are hard at work making final preparations for this year’s Erdheim-Chester Disease Medical Symposium. erdheim-chester.org/preparations-u…

At the 2025 ECDGA Celebration Dinner in Barcelona, the Host Award was presented to Dr. Xavier Solanich of Bellvitge Hospital. erdheim-chester.org/dr-xavier-sola…

At the 2025 ECDGA Patient and Family Gathering in Barcelona, Professor Julien Haroche was honored with the Mark Heaney Award for Excellence in ECD Clinical Care and Research. erdheim-chester.org/professor-juli…

During the 2025 Patient and Family Gathering in Barcelona, Father Charles Balnaves was recognized as the ECDGA Community Champion. erdheim-chester.org/father-charles…

Members of the ECDGA Medical Advisory Board and the Board of Directors came together during the Celebration Dinner at the 2025 Patient and Family Gathering in Barcelona. erdheim-chester.org/ecdga-leadersh…

Here is the group photo of the doctors who participated in the 2025 ECDGA Medical Symposium in Barcelona. erdheim-chester.org/medical-expert…

During the 2025 ECDGA Medical Symposium in Barcelona, physicians from around the world shared their latest findings and research focused on Erdheim-Chester Disease. erdheim-chester.org/advancing-ecd-…

The Erdheim-Chester Disease Global Alliance (ECDGA) is proud to share that our Medical Advisory Board member, Dr. Oshrat Hershkovitz-Rokah, will co-present a pivotal educational session at the 2025 European Hematology Association (EHA) Congress. erdheim-chester.org/attending-eha2…

The Erdheim-Chester Disease Global Alliance (ECDGA) is thrilled to announce the 2025 Global Steps Towards Awareness & Hope Virtual Fun Run, Walk & Roll! erdheim-chester.org/event/get-read…