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