Get Connected
1 in a million, but never alone.
An EHE diagnosis comes with a number that is hard to shake: fewer than 1 in 1,000,000 people are living with EHE at any given time. The people in your life want to help, but they don't have a frame of reference for what you're carrying.
That feeling of isolation is real and very common for people facing a rare disease like EHE. But you don't have to navigate this journey alone. The EHE Foundation hopes to help you find people who already understand the overwhelm and loneliness of this diagnosis. Below are the ways to find that community and stay connected.
EHE Community Newsletter
Be among the first to hear essential EHE news. Every month brings something worth knowing – new research findings, upcoming events, ways to get involved, and stories from others living with EHE. Our monthly newsletters will keep you informed.
Social Media
Follow @EHEfoundation
Get updates, community stories, and research news as they happen.
EHE Facebook Support Group
This active community of people affected by EHE shares day-to-day support and connection. Community-run and independent of the EHE Foundation, this group is not a source of medical guidance, and our team does not review or moderate activity within this closed online support group. Find the EHE Facebook Group.
EHE Foundation Virtual Support Groups
Connect directly with others who understand your journey. Monthly virtual support groups for people with EHE and the families and caregivers walking alongside them offer a compassionate, informal, and private space to discuss the challenges and realities of living with EHE. Learn more about EHE Foundation-hosted virtual support groups.
Get Connected to Research
Community and research move forward together. See how the EHE Foundation is advancing the science behind EHE and how people with EHE are helping to drive it.
Real voices. Lived experiences.
Every EHE journey is unique, and no one has to navigate it alone. Learn from people affected by EHE through their stories, challenges, and sources of strength.