Erdheim-Chester Disease Global Alliance

10/01/2025

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 Erdheim-Chester Disease.

Left to eight: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children’s University Hospital, Italy). Cross-border partnership ...

10/01/2025

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 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 ...

10/01/2025

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.

Diane Schriner at the ECDGA informational table, sharing details about the ECDGA’s support programs—including our growing network of ECD Referral Care Cente ...

10/01/2025

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.” Conversations like these help drive forward the scientific understanding of ECD.

10/01/2025

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 Group Coalition for Collaboration in Histiocytosis.” This project highlights the power of international advocacy collaboration- of which ECDGA is a proud participant.

Left to right: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA – Canada), discussing the poster, “Glob ...

10/01/2025

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!

This international meeting brings together physicians and scientists dedicated to advancing the understanding and treatment of histiocytic disorders—including Erdheim-Chester Disease (ECD), Langerhans Cell Histiocytosis (LCH), Rosai-Dorfman-Destombes Disease (RDD), and Haemophagocytic Lymphohistiocytosis (HLH).

The ECDGA team is focused on:

- Promoting research interest in ECD
- Strengthening global collaboration with fellow advocacy groups
- Advocating for the development of new ECD Care Centers around the world

It's inspiring to see momentum growing around ECD thanks to all the work and support of the ECD community.

Collaborative Research on Display! Left to right: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student & ECDGA Volunteer), Jerome Henson (ECDGA) ...

09/22/2025

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.

This annual funding opportunity supports innovative research focused on Erdheim-Chester Disease (ECD) and related adult histiocytic disorders, aiming to advance scientific understanding and improve patient outcomes.

09/18/2025

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): April 29–30, 2026
• Medical Symposium: April 30–May 2, 2026

Details on registration, venue, and program will be available soon.

Learn more at https://www.erdheim-chester.org

Erdheim-Chester Disease Global Alliance Announces 2026 Patient & Family Gathering and Medical Symposium Birmingham, AL — The Erdheim-Chester Disease Glo ...

09/18/2025

Ziggy Spreads a Heartfelt Message of Gratitude

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

To our patients, families, friends, and dedicated medical professionals—your strength, support, and commitment make a difference every single day. Your engagement doesn’t just help; it inspires others around the world who are navigating the challenges of Erdheim-Chester Disease (ECD).

At ECDGA, we know that no one should face this rare disease alone. Together, we are building awareness, supporting families, and advancing research that brings hope to the ECD community.

Share this video to spread awareness.

Like, comment, and subscribe to stay connected with the ECD community.

Every action, every voice, and every show of support creates ripples of hope. Thank you for being part of this journey.

09/12/2025

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.

Whether you joined us in person or are tuning in from around the world, these full-day video collections bring the same knowledge, hope, and connection straight to your screen.


Living with ECD: Deep dives into clinical manifestations, brain/eye and kidney involvement, and strategies to manage side effects.

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to share that every session from our 2025 Patient & Family Gathering and Medical Symposiu ...

09/12/2025

Ziggy the Zebra Spreading Awareness | One Day at a Time!