Join us
You are not alone.
If you have a child diagnosed with HIKESHI-leukodystrophy, or if you suspect your family may be affected — please reach out. Other families are out there. We're stronger together.
What we offer families.
Practical support, trusted information, and a community that understands.
A family community
Connect with other affected families around the world.
Trusted information
Curated, plain-language summaries of every published study on HHL.
Personal advocacy
Help navigating diagnosis, treatment, and second opinions.
Patient registry
Make your child counted — and helpful — to research.
Join our family registry.
All information is kept strictly confidential and used only to support families and advance research. A team member will reach out within 48 hours.