by publer | Nov 29, 2025 | Social Posts
Erdheim-Chester Disease is ultra-rare, but our community is powerful — and your donation helps amplify every voice.Remember: All gifts will be matched up to $90,000.Let’s spread awareness. Let’s support families. Let’s fuel research.
by Steven May Jr | Nov 28, 2025 | Social Posts
This year, your gift to the Erdheim-Chester Disease Global Alliance will go TWICE as far thanks to a generous $90,000 matching challenge. Your support fuels awareness, patient programs, and groundbreaking research. Stay tuned to learn how your impact can be...
by admin | Oct 29, 2025 | Social Posts
Living with Erdheim-Chester Disease—whether as a patient or caregiver—can bring overwhelming moments. Between doctor visits, uncertainty, and everyday life, it’s easy to feel the weight of it all. But you’re not alone. Here are a few gentle reminders and coping...
by Steven May Jr | Oct 1, 2025 | Social Posts
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 Advisory Board.
by Steven May Jr | Oct 1, 2025 | Social Posts
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 Erdheim-Chester Disease.
by Steven May Jr | Oct 1, 2025 | Social Posts
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.
