Patient Registry

The EHE Patient Registry is currently in development. Ultimately, our goal is to develop and maintain the largest active database of patient-reported information, , following patients through their EHE journey to establish a better understanding of this disease. By taking an active role in collecting longitudinal medical data from EHE patients, we aim to better inform the medical community and advocate for expanded research in this rare disease.

Please stay alert for more information about the Patient Registry coming soon!