I’ve always thought that the information given on this site (Genetics Home Reference) to be easy to read, not too much jargon and providing plenty of links to other sources. The information on HNPP can be downloaded as a pdf file. So it’s a great place to start gathering information for the newly diagnosed patient and their family.
I have linked to it before, but I see that the link has changed and the website has had a significant update.
I’ve noticed in the last few days that the HNPP.org website appears to be offline. I hope this is just a temporary glitch, but in the meantime the above link should provide some essential information.