Through a partnership with Inspire and the ULF, an online discussion community has been created for discussion amongst CTX patients. In addition to a CTX specific discussion area, there are areas created for every Leukodystrophy.
The CTX specific discussion board can be found here: http://www.inspire.com/groups/united-leukodystrophy-foundation/topics/cerebrotendinous-xanthomatosis-ctx/
The main ULF discussion board, with access to all of the other Leukodystrophy boards can be found here: http://www.inspire.com/groups/united-leukodystrophy-foundation/
Registration is required to read and participate in the discussions there.