Erdheim-Chester Disease Global Alliance

11/05/2025

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 Disease (ECD).

Their efforts help ensure ECD is recognized by clinicians and researchers around the world. Thank you, Diane, Jerome, and Dr. Sen, for representing the ECDGA and our community!

ECDGA President Diane Schriner, staff member Jerome Henson, and Dr. Mitali Sen, rheumatologist from the University of Alabama at Birmingham, attended the Am ...

10/28/2025

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to announce that Dr. Gaurav Goyal of the University of Alabama at Birmingham (UAB) recently met with ECDGA Board President Diane Schriner to begin planning the 2026 ECDGA Patient & Family Gathering and Medical Symposium.

This important event brings together patients, families, clinicians, and researchers from around the world to share the latest advances in Erdheim-Chester Disease (ECD) research, treatment, and patient care.

Dr. Goyal, a leading expert in histiocytic disorders and a dedicated member of the ECD medical community, will serve as host for the 2026 symposium at UAB. Under his leadership, UAB continues to be an important hub for ECD research, clinical trials, and patient support.

The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to announce that Dr. Gaurav Goyal of the University of Alabama at Birmingham (UAB) recently m ...

10/27/2025

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).

Led by Dr. Eli Diamond, a member of the ECDGA Medical Advisory Board, this research marks an exciting step forward in the treatment of MAPK-driven histiocytic disorders. For many in our community, like Joey, a member of the ECDGA whose journey continues to inspire us, these scientific breakthroughs represent far more than clinical progress. They offer hope.

A new study from Memorial Sloan Kettering Cancer Center highlights the promise of ulixertinib, a targeted therapy drug that blocks ERK, for treating certain ...

10/20/2025

Plans are underway for the Patient & Family Gathering and Medical Symposium 2026 in Birmingham, AL. Staff, Board President, and Host Dr. Gaurav Goyal meet to discuss the upcoming conferences. Make sure to plan to attend.

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

Collaborative Research on Display! Left to right: Diane Schriner (ECDGA), Elise Fitzerald (UAB Medical Student & ECDGA Volunteer), Jerome Henson (ECDGA), discussing the poster, “Filling an Unmet Need: A Review of the ECDGA Registry”. The ECDGA contact registry helps drive data-informed progress in ECD research and care.

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.