Our Volunteering


We cannot afford to pay for employees at the current time. As a small charity supporting an ultra-rare cancer, we receive limited funding, and the funds that our great supporters do raise go all to research. This is only possible because we are fortunate to have one donor who funds all our charity running costs. This means that one hundred percent of all funds we receive from other donors and sources goes to EHE research, something we are very proud of. However, it also means that we rely on volunteers, who so generously donate their time, to help us run the charity.

The key areas where support is required are listed below:

Donation support : all areas of fundraising strategy development, preparation and communication to all levels of potential donors, from individual patients to large scale corporate or foundation donors.

Fundraising : assisting in the execution of the Charity’s fundraising activities at all levels, including pre-fundraising support and resources, actual fundraising support and management, and post-fundraising analysis and reporting.

Research : engaging with researchers to discuss research objectives, patient needs, funding requirements, grant availability, research progress reporting and collaborative sharing of results and information. Promoting the availability of bio-samples and access procedures;

Treatment : monitoring, communicating and discussing research results with clinicians while also communicating and discussing clinical needs with researchers, ultimately seeking to main an ongoing dialogue between key parties to optimise the overall research process; also tracking clinical trials and their results and maintaining engagement with academia and regulatory bodies to optimise drug approval processes.

Patients : monitoring and communicating patient needs to clinicians and researchers while also communicating research and clinician needs to patients; monitoring and promoting appropriate new treatment, clinical trials etc; providing regular updates and ensuring patient support is maintained for biobanks and registries etc.

If you think you have some available free time that you could use to help us in our activities, then please contact us so that we can explore and discuss how we could involve you in a manner that works for both you and the charity. We do recognise that volunteering is not sustainable unless it involves only the time a person has available, and involves activities that that person enjoys. It is finding a role that delivers on these two key requirements that we would love to discuss.

And here are just some of our amazing volunteers: