Pages and Articles I have come across so far...

The DTRF (Desmoid Tumour Research Foundation) based in America.

Association SOS Desmoïde - A French Site but parts of the site are in English.

This site has to be one of my favourites, clear and easy to read with plenty of information.

The DTRF Facebook Page - one of the best.

AngelJanes World - A post about Desmoid Tumours

Also her twitter...