If you have been diagnosed with EHE, or are caring for a loved one who has, we are here to help. The first fact to grasp is that you are not alone. At the very core of our charity’s activities is our Patient Support network, driven by our members around the world. They understand what you are feeling, and how frightening the EHE diagnosis is, because they have lived through the same situation and are continuing to live with EHE. Members of our ‘EHE family’ are in touch with one another on a daily basis through our Facebook Page. We encourage you to join in, and benefit from the support, encouragement, advice, compassion and love that have been shared with many people in your situation. In this section you will find links to the different PATIENT FORUMS that we can offer.

In this section you will also find information about our important worldwide EHE patient registry and tissue sampling programmes, information for caregivers, and other sources of information that we hope will be useful. You will also find some of our members’ stories, which you might find helpful.