With the generous support from the Chan Zuckerberg Initiative Rare As One Project, The EHE Foundation in the USA, on behalf of the EHE Group and the global EHE patient community, hosted the first ever EHE-dedicated international scientific conference, called “EHE360” in January. The event was held in a virtual format over two consecutive Fridays, which allowed global participation by international researchers and clinicians and of course our EHE global community.
The first session was dedicated to research, where nine world class researchers presented their EHE research, and the exciting results they are seeing. They were also able to answer questions posted by the global audience. This also gave our speakers the chance to discuss the future of not only their research, but also EHE research as a whole, both from the perspective of the objectives and deliverables of such research, and also the challenges in delivering these programmes.
The second session was dedicated to clinical management of EHE, where nine clinical specialists, each an expert in their field, presented different aspects of the diagnosis, treatments, and management of EHE. Question and answer sessions again followed each speaker’s presentation and gave real insight to the clinical community’s dedication and provided care, as well as the challenges they face in treating such a rare cancer.
We know from the post-event feedback that many of our EHE community found the conference uplifting, enlightening, encouraging and inspiring. But of course an event such at the EHE360 Conference does not just happen. Putting the conference together, organising the speakers, promoting the event and creating all the infrastructure and procedures to ensure the event is ultimately seamless and highly- professional, and reaches its target audiences, takes a huge amount of time, dedication and very hard work. We therefore want to thank all of those involved in delivering this world-first EHE conference, and give a special mention to Jenni Kovach who MC’ed the two days, Medha Deoras Sutliff and Denise Robinson for their dedicated focus and organization, and David Casimir for his faultless stewardship of the speaker sessions.
Finally, we want to again thank all the speakers for their brilliant contributions, and of course the Chan Zuckerberg Initiative Rare As One Project for their wonderful support both for this conference and our ongoing activities to defeat EHE.