We asked Dr Abigail Evans, Scientific Project Manager of the EEC what this funding had enabled the EEC to achieve and here is her response:
“The EEC aims to improve survival and outcomes for patients with Ewing sarcoma. Because it is a rare disease, it is essential that people in the field work together to share knowledge, experience, resources, and data, and for patients to be recruited to international trials.
There is no funding from national organisations to support this so financial support from the Ewing’s Sarcoma Research Trust has been essential to bring together Ewing sarcoma researchers, health professionals and patient advocates from across Europe and beyond.
And the EEC is becoming increasingly recognised by international groups, as well as pharmaceutical companies, and has taken part in the discussion of potential industry-collaborations. Outcomes of these, include the inclusion of novel agents in two clinical trials, developed under the auspices of the EEC and membership of the American data sharing group HIBiSCus.
Support for collaboration has enabled annual meetings focussing on Ewing sarcoma research where delegates are able to make new, and strengthen existing, contacts, discuss new ideas, develop clinical trials, prioritise, and set the direction for Ewing sarcoma research. Patient advocates have had the opportunity to be active members on committees, to make their voice heard and push for better, kinder treatments. A website and regular newsletters keep the EEC network up to date on progress and members of the EEC now represent 23 countries.
Patient data is a hugely valuable resource, and the EEC has made progress in making data accessible from earlier trials and for ensuring that the data from future trials is collected in a similar format so that it can be combined and enable questions to be answered with greater certainty.
A new development within the EEC, made possible thanks to the support from Ewing’s Sarcoma Research Trust, is the establishment of new working groups for surgery and radiation oncology. These groups will focus on aligning research questions across clinical trials and supporting the standardisation of treatment for Ewing sarcoma to improve the quality of care for all patients.”
Our charity is delighted to be able to continue its financial support of the EEC beyond November 2021, but this has only been made possible through the continued generosity of our supporters and wonderful fundraisers.