Link to the registry here: https://connect.patientcrossroads.org/?org=cravat
We seek to establish a robust registry of EHE patients. This will allow us to identify the best management strategies by linking signs, symptoms, treatments and other key metrics to patient outcomes. The concept of this patient database was originally developed through the HEARDsupport.org website, an informational web forum. We hope to carry on and extend the work of this ground-breaking effort.