ECDGA President Diane Schriner, staff member Jerome Henson, and Dr. Mitali Sen, rheumatologist from the University of Alabama at Birmingham, attended the American College of Rheumatology (ACR) Annual Conference to raise awareness about Erdheim-Chester.. https://t.co/exTKsiWLmp

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to announce that Dr. #birmingham #ECDGA #ErdheimChester #ErdheimChesterDisease #histio #MedicalSymposium #PatientFamilyGathering #RareDisease https://t.co/iMI1uVMOfa

A new study from Memorial Sloan Kettering Cancer Center highlights the promise of ulixertinib, a targeted therapy drug that blocks ERK, for treating certain forms of histiocytosis, including Erdheim-Chester Disease (ECD). https://t.co/AF8VCQwUNI

International Collaboration in Action! - Left to eight: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children’s University Hospital, Italy). Cross-border partnerships are essential in advancing the understanding of .... https://t.co/2IngpHRuxU

Insight from the ECDGA Medical Advisory Board! - Left to right: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), and Jerome Henson (ECDGA) discuss care strategies and research priorities. Dr. Go is a valued member of the ECDGA Medical ... https://t.co/NBOc5wqQK1

Raising Awareness of ECDGA Programs! - Diane Schriner at the ECDGA informational table, sharing details about the ECDGA’s support programs—including our growing network of ECD Referral Care Centers around the world. https://t.co/yJQqyKGbph

ECD Research Being Shared! - Left to right: Jerome Henson (ECDGA), Laura Eurelings, MD (Erasmus MC University Medical Center), Diane Schriner (ECDGA), discussing the poster, “Anti-IL-6 Therapy in Erdheim-Chester Disease.” https://t.co/0I9MBgyKgX

Collaborative Conversations in Action! - Left to right: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA – Canada), discussing the poster, “Global Histio: The international Patient Advocacy ... https://t.co/WXdlBiTxOR

This week, ECDGA President Diane Schriner, Board Member Paul Hendrie, MD, and team member Jerome Henson are proudly representing the Erdheim-Chester Disease Global Alliance at the 41st Annual Meeting of the Histiocyte Society! https://t.co/ipsQzvCKPC

The Erdheim-Chester Disease Global Alliance (ECDGA) is issuing a final call for Letters of Intent (LOIs) for the 2025 research grant. The application period closes tomorrow, so there is only one day left to submit. https://t.co/gYSD7e6QCF

Save the Date – Birmingham 2026 -Join us in Birmingham, Alabama for two key events hosted by the Erdheim-Chester Disease Global Alliance and UAB School of Medicine - Patient & Family Gathering (PFG): https://t.co/03hsjVNGzb

Ziggy the Zebra, the beloved mascot of the Erdheim-Chester Disease Global Alliance (ECDGA), is here with a heartfelt message of gratitude. https://t.co/EatpmAGKTs

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to share that every session from our 2025 Patient & Family Gathering and Medical Symposium—held May 26–27 in vibrant Barcelona—is now available to watch online. https://t.co/DWfySvOgJE

This Erdheim-Chester Disease Awareness Week, we’re honored to introduce you to Edith and Mike Watters, a remarkable couple whose journey reflects the courage, resilience, and creativity of our community. https://t.co/toYHylQU3V

At the 2025 Erdhem-Chester Disease Medical Symposium in Barcelona, the ECDGA Junior Investigator Award went to Laura Eurelings of Erasmus University Medical Centre, Rotterdam. https://t.co/QeZLvGAb0K

The July 31 Canada Monthly Chat was a truly special event, featuring guest speaker Gary Tobin, who shared his extraordinary journey of resilience and survival after being diagnosed with stage 4 Acral Lentiginous Melanoma. https://t.co/CwJ2lwrA5z

ECD Awareness Week is September 8–14, 2025, and we need YOU to help raise awareness and show the world what it means to be part of the ECD family. https://t.co/cBQ782x1uA

Erdheim-Chester Disease, also called ECD, is a very rare kind of blood cancer. It is so rare that some medical articles estimate that only about 2,000 cases around the world have been documented. Our bodies have special cells called histiocytes. https://t.co/3aetSpZNdM

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to introduce our newest team member—Ziggy the Zebra! https://t.co/3ULYtgvaG2

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to introduce our newest team member—Ziggy the Zebra! Ziggy isn’t your average zebra. Ziggy represents awareness, hope, and community for those living with Erdheim-Chester Disease (ECD). https://t.co/0WdKZoOalV