In March Denise Robinson, Director of Research for The EHE Foundation attended the ESMO Sarcoma and Rare Cancers Congres 2024 in Lugano, Switzerland. This congress brought together world-renowned experts including researchers and clinicians, to present and discuss the latest advancements in the treatment of sarcomas and rare cancers. 

Topics ranged from the role of immune therapy for sarcomas – not specific to EHE, to our learning of the achievements of the Australian Rare Cancer (ARC) Portal, presented by Dr. Betty Zhang including EHE patients. Dr. Zhang impressed upon the audience the importance of such a resource for clinicians treating rare cancer patients in a vast geographic region where access to expert care is challenging.

One session featured speakers discussing new EU pharma regulations, including representatives from the European Society of Medical Oncology (ESMO) and the European Medicines Agency (EMA). Of note to the EHE community, Silvia Stacchiotti, MD, INT Milan, and Pan Pantziarka, PhD gave passionate talks highlighting patients’ needs for new EU regulations that could, if implemented, improve opportunities to repurpose safe and effective drugs for use in rare diseases, and in EHE. 

In addition to formal sessions, Denise had the opportunity to meet with other leaders of the PUSH Platform initiative, where a prospective observational study of EHE is in development. 

Denise shared “It is an honor to attend meetings like this, representing EHE patients around the world. It is also inspiring to witness the talent and time of world-renowned experts working alongside patients’ advocates to find treatments and a cure for this disease.”