EHERCC presents at ESMO 2022


Hugh Leonard was honoured to have been invited to participate at the ESMO 2022 Conference in Paris on 10th September. The session was dedicated to ultra-rare cancers and Hugh was asked to speak about advocating for ultra-rare diseases.

Hugh’s talk introduced EHE to the audience before presenting an overview of why the general model for dealing with cancers does not work for ultra-rare diseases like EHE, concluding that for these cancers, strong patient advocacy is critical. Hugh then went on to describe the history of the EHE community, from setting up the patient support page to establishing the first three foundations, in 2015, through to today with the latest foundation established in Italy.

Hugh then was able to describe the fundraising activities of the EHE community worldwide, and  show the huge change in EHE research between 2015 and today, due to the funds raised by the EHE community.

Hugh finished by dealing with six key challenges faced by ultra-rare cancers, and suggesting ways in which the oncology community can help with the support of patient advocacy groups.

Hugh commented: “It was a great honour and wonderful chance to be able to present at such a prestigious gathering, and tell them about our story. Thank you to ESMO for that opportunity.