We are delighted to be able to report excellent progress, with over 200 people representing 19 countries from around the world having already joined the EHE Global Patient Registry. This is a great start, but we want many more. It is hard to overstate the importance and benefit of every single patient contribution.
Denise Robinson who is PI for the Registry in the commented:
“The value and benefit of a registry is directly related to the number of patients that are included. So please, if you haven’t already joined, we encourage YOU to please consider joining today! Go to https://eheregistry.iamrare.org/ to find out more and register to join. Your input will help doctors, researchers, and other patients know, for example, how many people have EHE that is like your disease. By collating and analysing this data your input may lead to break-through understanding of EHE. Please don’t just leave it to others. Join the registry today.”
If anybody has any questions or concerns about the registry, then please reach out to your nearest EHE Group foundation who will be able to help.