Patient forums


Available support

If you have recently been diagnosed with EHE, you are not alone. There are many others in the same situation. At the core of our charity are our members who have been diagnosed with EHE, and their families and friends. Many of these openly engage in discussions on a wide range of topics associated with EHE, sharing valuable information and experiences, and providing mutual support.


Privacy maintained

For some people, confidentiality and privacy are important, and engaging in open forums can be stressful. But there are other ways to join in. Many of our members are happy to engage through offline private communications, using social media messaging systems or email.


Join our 'family'

Many people with rare conditions feel isolated and lonely. Our patient forums and/or one-on-one discussions help patients interact with others in the same situation, regardless of where they live. If you have been recently diagnosed with EHE, we encourage you to join our forums and become part of our EHE family. The current forum, already active, can be found at the EHE Facebook Closed Group page.