Inspiration & Support
When you are diagnosed with an ultra-rare disease like EHE, you may experience feelings of isolation, confusion, and even demoralization. Connecting with others affected by EHE and finding resources for support and inspiration can help, offering hope and encouragement when you need it most.
EHE Foundation Virtual Support Groups
Free, professionally facilitated virtual meetings for people affected by EHE at any stage of their journey. Share what you are going through and hear from people who understand it firsthand.
Stories of Hope
Real people, real EHE experiences, told in their own words. Video and written stories from people living with EHE and the caregivers who love them.
Get Connected
Find people who understand what it means to live with EHE. Whether you connect through social media or prefer community updates by email, connecting with others affected by EHE is only a few clicks away.
Caregivers are part of the story.
When a person you love is diagnosed with EHE, you are thrown into a new world of appointments, scans, and treatment options, all while navigating your own life.
Explore resources to help carry the load, and remember that taking care of yourself is part of caring for them.
Just Live!
Born from one woman's determination to continue to live fully after an EHE diagnosis, Just Live has become this community's rallying cry. Many wear it as a tattoo and a reminder that you are more than your diagnosis.
Additional Resources
Financial assistance, air transportation, second-opinion support, global EHE organizations, and more: a curated list of resources to help you navigate EHE.
Navigating Insurance
Tools and guidance for understanding insurance authorizations, denials, and appeals.
Inspiration Through Fundraising
For some, the unique support and community found in fundraising can be profound. The people around you want to help, and supporting a fundraiser for EHE research can be the perfect way to channel their desire to help.
Every gift moves the science forward and connects you to a community working toward the same goal: better treatments today and someday, a cure for EHE.
Build awareness. Bring hope.
Sharing your EHE story can be a powerful way to connect with this community and help others feel connected, too.