In September 2023, EHE Director of Research Denise Robinson met over three days in Milan, Italy, with patient advocates and researchers to discuss EHE research funded by this community. Exciting progress is happening in this multi-national collaborative research under the leadership of Dr. Silvia Stacchiotti and Dr. Nadia Zaffaroni (Istituto Nazionale Tumori IRCCS, Milan), and Dr. Paul Huang (The Institute of Cancer Research, London). Key takeaways from this meeting:

• EHE PDX model and cell line development are producing important results in understanding the effectiveness of various treatments.
• A potential biomarker has been identified and is undergoing further assessment to better understand its role in predicting EHE prognosis and tumor activity.
• Additional EHE patients will be enrolled in the studies to gain more tumor samples and data from patient observations.

Additionally, the STARTER Project Registry was kicked off. This is a clinical registry of adult patients with rare cancers, developed under the leadership of Dr. Anna Maria Frezza and Annalisa Trama at the INT Milan. Patients will be enrolled by their clinician at 22 participating centers across Europe. This is an excellent complement to the EHE Global Patient Registry. STARTER includes data entered by doctors, while the EHE Global Patient Registry is data entered by patients. EHE patients are encouraged to join the registry to share their unique EHE experiences.

This was the first meeting of the UK, Italian, and US advocacy groups and represents a global effort to move the needle on the science and research of EHE. Many thanks to Hugh Leonard, EHE Rare Cancer Charity UK for sponsoring the meetings, and to Andrei Ivanescu, President of the newly formed EHE Italia, for hosting. Andrei brings passion and talent to the EHE community, and with his leadership, is advancing our fight to end this disease. It was an honor for The EHE Foundation to join with global advocates, doctors, and researchers to advance our aligned mission to find treatments for this disease.

Stay tuned for more updates from Italy and European efforts in the coming months!