We soon discovered that understanding the disease is just a small part of what we needed.  We needed to know other people who were going through our journey.

Here are a few ways we were able to find others who wanted the same cure we did for 4H Leukodystrophy:

POLR3 Leukodystrophy/4H Syndrome

Open Facebook group

POLR3 Caretakers/4H Leukodystrophy

Closed Facebook group for caretakers