Building an EHE Research Strategy

EHE Research strategy

While in Milan, EHE Group representatives met with and focused on the need for a research strategy for EHE. Hugh Leonard explained: 

The EHE global community has done an extraordinary job of promoting research into EHE and getting an exciting portfolio of EHE research up and running. This of course has only been possible because of major donations and the amazing grassroots fundraising effort of so many in our global patient community and their supporters. 

With continued successful fundraising, it is imperative that we develop a pro-active research agenda that prioritises areas where there are gaps in our knowledge, to bring forth critical data and advances in the development of treatments for EHE. This will also allow us to develop and promote a coherent multi-year research programme and associated budgets which we hope will in turn allow us to engage with larger sources of funding. 

Denise Robinson, Director of Research for The EHE Foundation is also working actively to help develop the strategy. Denise commented: 

Our goal is to produce a research strategy that will guide our research planning and help us collectively achieve our research goals – to find effective treatments for EHE. To date, we have funded amazing projects that have advanced knowledge in EHE; now is an appropriate time to assess the gaps in knowledge that need to be addressed in order to accelerate research that ultimately will improve the lives of people diagnosed and living with EHE.’ 

These strategic discussions in Milan were the first in which the EHE Group has been able to engage with clinicians and researchers who are actively working with EHE to seek their input and direction, for which the EHE Group are extremely appreciative, as Andrei highlighted: 

We could not be more grateful to Drs Stacchiotti, Frezza, Zaffaroni, Pasquali (all INT) and Huang (ICR) for giving us a whole afternoon to discuss and review our EHE research needs. They helped us clarify and identify key steps in identifying and prioritising EHE research objectives that will then allow us to build an overall EHE strategy. 

However, it is not just the opinions of clinicians and researchers that the EHE Group want to hear, as Hugh, Denise and Andrei all noted: 

It is so important that we engage with our global patient community and also seek their input to this research process. The patients’ view is very powerful when collectively voiced, and there is no group more vested in achieving positive outcomes than the global EHE community. So we will ensure that they are involved. 

The team hope to be reaching out to patients in the near future as they move forward with building the research strategy.