Our Work

Our Work

Our objective as a patient advocacy organisation for an ultra-rare disease is ultimately to promote and drive processes that will allow us to find new treatments and a cure for EHE, and bring forward the day when an EHE diagnosis will no longer need to be feared. But this is not easy. There are multiple layers involved in the process and each layer needs to work to deliver the desired treatments and cures.

The overall process is summarised below:

We need to ensure that each level in the above process is properly resourced, structured and promoted so that it can appropriately and efficiently:

  1. interact with all other levels to ensure the overall process is operating as smoothly and efficiently as possible;
  2. use the support it receives from levels below and the information it receives from the levels above to continuously refine and improve its activities; and
  3. successfully provide all deliverables to the levels above so that they can progress.

It is probably clear that there is a lot to work, and that is why we need your help. See the next page to understand how you could help as an EHERCC Volunteer.