Awareness and advocacy

 

Rare cancer challenges

Patients with very rare cancers can encounter a lack of knowledge and awareness about EHE, even amongst the medical community. Several of our members experienced a difficult diagnosis due to the extremely rare nature of this cancer. The overall effect can be frightening, and leave patients feeling scared and isolated.

 

Advocating for change

As part of its overall strategy, the EHE Rare Cancer Charity (UK) works to improve awareness of EHE. We will strive to do this in the medical world, including oncology centres; within government and funding agencies and foundations; and with the general public.

We are also determined to do all we can to increase expenditure on research into rare cancers, including EHE, so that those with rare cancers are not forgotten and their cancers are included within the overall cancer research effort. We do not believe this would be at the cost of research into common cancers. As so little is currently spent on research into rare cancers, small increases in funding would represent substantial increases in percentage terms and generate significant progress. We will continue to work hard to deliver this.

At all times we keep at the forefront of our campaigns the simple fact that rare cancers are not rare to those who have them. They are very real, very frightening and sadly, in too many cases, fatal. We hope you will join us in working to make a difference for patients with EHE and other rare cancers.