Epithelioid Hemangioendothelioma (EHE) Working Group
Advancing global research collaboration for epithelioid hemangioendothelioma.
Our Focus
Epithelioid hemangioendothelioma (EHE) is an ultra-rare, translocation-associated vascular sarcoma characterized by fusion genes involving WWTR1–CAMTA1 in most cases, and YAP–TFE3 or WWTR1–MAML2 in a minority. The disease exhibits a highly variable clinical course, from indolent to aggressive, and therapeutic options remain limited.
The EHE Working Group was established to unify global efforts to improve understanding of the disease, integrate clinical and molecular data, and accelerate the development of effective therapies. By coordinating expertise across research centers, the group aims to create a foundation for better diagnosis, monitoring, and treatment for people affected by EHE.
Our Objectives
To define the natural history and biology of EHE, refine disease assessment tools, and identify new therapeutic opportunities through collaborative clinical and translational research
Our Core Initiatives
The EHE Working Group was established to unify global efforts to improve understanding of the disease, integrate clinical and molecular data, and accelerate the development of effective therapies. By coordinating expertise across research centers, the group aims to create a foundation for better diagnosis, monitoring, and treatment for people affected by EHE.
Our Objectives
To define the natural history and biology of EHE, refine disease assessment tools, and identify new therapeutic opportunities through collaborative clinical and translational research
Our Core Initiatives
- Develop and activate an international observational protocol to collect clinical and molecular data (POEM).
- Validate new radiological and pain response criteria (RESCORe and PAC).
- Advance novel therapeutic strategies through preclinical and clinical collaboration.
Ultra-rare Rhabdomyosarcoma Group Team
Lorenzo D’Ambrosio, MD, PhD, Co-Chair
Medical Oncologist, Department of Oncology, University of Turin and AOU San Luigi Gonzaga di Orbassano, Italy
Silvia Stacchiotti, MD, Co-Chair
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Denise Robinson, Patient Advocate Co-Chair
The EHE Foundation, USA
Hugh Leonard, Patient Advocate Co-Chair
The EHE Rare Cancer Charity, United Kingdom
Pan Pantziarka, PhD, Member
Sarcoma Foundation of America
William Tap, MD, Member
Medical Oncologist, Memorial Sloan Kettering Cancer Center, New York, USA
Anna Maria Frezza, MD, Member
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Tom Chen, MD, Member
Medical Oncologist, National Taiwan University Hospital, Taipei, Taiwan
Claudia Giani, MD, Member
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Alessandra Merlini, PhD, Member
Translational Researcher, University of Turin, Italy
Sandro Pasquali, PhD, Member
Translational Researcher, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Rosalba Miceli, PhD, Member
Statistician, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Luca Zambelli, MD, Member
Pain Medicine and Palliative Care Specialist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Andrea Vanzulli, MD, Member
Radiologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Medical Oncologist, Department of Oncology, University of Turin and AOU San Luigi Gonzaga di Orbassano, Italy
Silvia Stacchiotti, MD, Co-Chair
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Denise Robinson, Patient Advocate Co-Chair
The EHE Foundation, USA
Hugh Leonard, Patient Advocate Co-Chair
The EHE Rare Cancer Charity, United Kingdom
Pan Pantziarka, PhD, Member
Sarcoma Foundation of America
William Tap, MD, Member
Medical Oncologist, Memorial Sloan Kettering Cancer Center, New York, USA
Anna Maria Frezza, MD, Member
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Tom Chen, MD, Member
Medical Oncologist, National Taiwan University Hospital, Taipei, Taiwan
Claudia Giani, MD, Member
Medical Oncologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Alessandra Merlini, PhD, Member
Translational Researcher, University of Turin, Italy
Sandro Pasquali, PhD, Member
Translational Researcher, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Rosalba Miceli, PhD, Member
Statistician, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Luca Zambelli, MD, Member
Pain Medicine and Palliative Care Specialist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Andrea Vanzulli, MD, Member
Radiologist, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy
Join us in advancing collaborative research and improving outcomes for people diagnosed with epithelioid hemangioendothelioma.
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