The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the appointment of Jerome Henson as its new Executive Director. Jerome brings with him more than 30 years of leadership experience in education, having served as a teacher, principal, and curriculum supervisor throughout his distinguished career.
Following his retirement from education, Jerome now turns his passion for service and leadership toward advancing the mission of the ECDGA: supporting patients and families affected by Erdheim-Chester Disease and accelerating progress through advocacy, education, and research support.
“Jerome’s extensive background in leadership, communication, and organizational development makes him an exceptional fit for the Executive Director role,” said Diane Schriner, President of the ECDGA Board of Directors. “His commitment to people, combined with his strategic experience, will help strengthen our organization and expand our impact within the rare disease community.”
Throughout his career in education, Jerome was known for building strong teams, mentoring professionals, and improving outcomes through thoughtful curriculum development and collaborative leadership. These skills will support ECDGA’s ongoing efforts to connect patients worldwide, raise awareness within the medical community, and improve quality of life for those living with Erdheim-Chester Disease.
Outside of his professional life, Jerome enjoys spending time outdoors hunting, working on woodworking projects, and, most importantly, spending time with his family. He and his wife share two daughters, a son-in-law, and a granddaughter, who are central to his life and values.
“I am honored to join the Erdheim-Chester Disease Global Alliance and to serve a community that demonstrates such strength, resilience, and compassion,” said Jerome Henson. “I look forward to working alongside patients, families, volunteers, and supporters to continue advancing the important work of ECDGA.”
For more information about the Erdheim-Chester Disease Global Alliance or its programs, please visit www.erdheim-chester.org