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 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.
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.
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.
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.
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.