Research Updates

Marije Weidema

Dr. Marije Weidema from Radboud University is pictured at ESMO 2019. Dr. Weidema published an article last year on the quality of life and symptom burden of EHE patients. EHE Foundation's Director of Patient Services, LIsa De Young and Hugh Leonard, EH Rare Cancer Charity UK, are listed as co-authors in the Abstract: "A global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in Epithelioid Hemangioendothelioma (EHE) patients"

Milestone Event for EHE Research - We Have a Mouse!

In 2019, after several years of hard work, Dr. Brian Rubin’s EHE lab at The Cleveland Clinic announced the exciting news of the creation of a genetically engineered EHE mouse. This is a milestone event in our fight to find a cure for EHE. The absence of a viable EHE animal model has been one of the most detrimental roadblocks to EHE research. A long list of important studies that can be carried out only in an animal model has not been available for EHE research.

Dr Rubin was also delighted with the progress achieved and the apparent quality of the model. He stated, “I've done a thorough review of the mice that have been used to generate histology so far and we are seeing EHE's in all anatomical areas seen in humans. Additionally, I have immunohistochemical verification (CD31 and CD34 positivity) that the lesions do show endothelial differentiation. This model is remarkable and truly does represent a breakthrough. We are now working on freezing tissue for development of cell lines, xenografts, and for molecular / expression profiling analysis.” The EHE community should be very proud, as the US, UK and Australia Foundations have been funding Dr Rubin’s work since 2016 and have therefore played an important part in this breakthrough.

The EHE Foundation's support is acknowledged in research published in Modern Pathology

The EHE Foundation's support is acknowledged for the first time in research published in the prestigious journal, Modern Pathology, entitled "Prognostic stratification of clinical and molecular epithelioid hemangioendothelioma subsets" Dr. Christina Antonescu and her colleagues at Memorial Sloan Kettering, New York City, describe the most comprehensive attempt to date to stratify EHE prognosis based on EHE pathological findings. More information can be found here:

Read more here...

Historic initiative at MSK begins in Fall 2019 to create an International Center of Expertise in EHE Research!

With the support of The EHE Foundation and our generous donors, Memorial Sloan Kettering Cancer Center in NYC will work over the next 3 years to establish an “International Center of Expertise in EHE Research" The project will be led by Dr. William Tap, Chief, Sarcoma Medical Oncology Service, and Dr. Cristina Antonescu, Director, Bone and Soft Tissue Pathology at MSK.

Goals include creating an EHE clinical database and tissue/blood biobank; instituting a multidisciplinary EHE patient care team focused not only on clinical presentation, but also pathology findings; launching a comprehensive research program to include various genetic projects, immunotherapy, development of EHE models and multiple drug screenings; developing a central EHE Collaborative Core by providing tissue and genomic data to other researchers studying EHE

Collaboration with Dr. Brian Rubin

The EHE Foundation continues to support the important work of Brian Rubin, M.D., Ph.D., Chair of the Robert J. Tomsich Pathology & Laboratory Medicine Institute at the Cleveland Clinic. Dr. Rubin continues to lead the search for targeted therapy for EHE. A comprehensive program Dr. Rubin oversees includes the following key areas:

  • Thorough analysis of molecular mechanisms of EHE initiation and progression and identification of possible targets.
  • Screening of hundreds available compounds for effective disruption of molecular pathways involved in EHE
  • Development of EHE animal models
  • Collaboration with researchers around the world working on various EHE projects

Multi-institutional Retrospective Medical Chart Review

In 2019, The EHE Foundation initiated a global multi-institutional retrospective chart review of EHE patients in order to describe EHE biological behavior, treatment utilization, and outcomes across various EHE locations. This is the first large-scale EHE study which will further inform clinicians and researchers for future treatment decisions and research initiatives.

Dr. Christina Antonescu Research Grant

In 2019, The EHE Foundation continues to award a research grant to Dr. Christina Antonescu at Memorial Sloan Kettering Cancer Center in New York, New York for her research entitled a “Molecular and Immune Characterization of EHE Clinical Subtypes”; a comprehensive study of EHE genetics and the tumor microenvironment. The study will map intra-tumoral molecular differences between various subtypes of EHE, as well as variations in immune cells infiltrating and surrounding EHE tumors. The objective of this research is to identify potential targets for various types of treatments including immunotherapy.

Tissue Donation

The EHE Foundation is collaborating with the Rare Cancer Research Institute’s and The Broad Institute to further the development of an EHE cell line. Cell lines are the main model to study cancer behavior and response to various therapies. Cell line development can be a very complex process which begins with coordination between patients and providers on tissue donation.. EHE patients are demonstrating exceptional understanding of the importance of donating their tissue to research and we continue to support patients by providing easy access to a well-coordinated tissue donation program.

Read more about our Tissue Donation program here.


The EHE Foundation is excited to announce a partnership with the MyPART network of NCI’s Rare Tumors Initiative (RTI) – which focuses on accelerating the translation of potential new therapies for rare tumors by bringing together patients, clinicians, researchers, and patient advocates.

EHE Patient Encyclopedia

One of the primary goals of the EHE Foundation is to help patients, their loved ones and caregivers, find easier ways to get information about their disease from other patients. This information is archived in the EHE Patient Encyclopedia for historical reference, and provided for reference. Click here for more information.

EHE Patient Registry

The Patient Registry is in development. This research project prospectively will include EHE patients from all over the world who will volunteer their information regarding their diagnosis and treatment. This information will ultimately be used to understand the natural history of EHE, treatment outcomes, and to help accelerate research. Click here for more information.

Our Global Partners in EHE Research

Our sister charities, The UK EHE Rare Cancer Foundation and the EHE Rare Cancer Foundation Australia are currently supporting several important projects as well. Please visit their websites for more information on EHE Research in the UK, Australia and world-wide.

Proud partners with...