We can connect you to others in a similar situation so you can share experiences and gain mutual support. The way we do this is by putting families in contact with each other who have the same condition or with similar symptoms. Putting people in contact with each other by similar symptoms can be especially helpful in the case of the very rare or unnamed leukodystrophies. If you would like to talk to other families then please let us know. The families we support have all said that this peer support is invaluable in helping them to cope and feel less isolated.
If you would like to talk to other affected families, then contact firstname.lastname@example.org