Welcome! We understand it is a scary and uncertain time for you and your family. Please email our Director of Patient Liaison Services, Lisa De Young for support. She can be reached at LisaDeYoung@fightehe.org
You can also request to join the EHE Support Group on Facebook
. While the EHE Foundation does not maintain or monitor the Facebook group, many people find that it's a good resource for understanding this rare disease.
We look forward to hearing from you!