As a consequence of Facebooks ever changing conditons of service and changes to group interfaces, the Herediary Neuropathy and CMT group has become a closed group. Which is probably just as well, with facebook being used by employers and other agencies, users felt uncomfortable with public postings.
However, this has left a hole for public information about HNPP, and it is questionable whether a forum is really suitable for that purpose.
After some discussion it was thought that a Public Group Blog might be the ideal way to present information about HNPP and other neuropathies, as well as providing a space for users of that blog to write down their personal experiences whilst retaining a level of anonymity (or not). It is probably far more secure than facebook, and offers many presentational options.
The Public Group Blog can be found here,
I have also placed a link to this blog on this blogs menu bar.