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

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

http://www.dtrf.org/

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

http://www.sos-desmoide.asso.fr/article.php3?id_article=50

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

http://whippetrun_bc.tripod.com/the_fibromatosis_page/index.html

The DTRF Facebook Page - one of the best.

http://www.facebook.com/groups/desmoidtumorRF/

AngelJanes World - A post about Desmoid Tumours

http://angeljanesworld.blogspot.com/2011/08/desmoid-tumour-research-foundation.html

Also her twitter...

http://twitter.com/#!/angeljane01