If you have been diagnosed with a desmoid tumor or know someone who has you can find the answers to many of the questions you have at The Desmoid Tumor Research Foundation website. Their FAQ page is a great place to start. You can also find a list of specialists on their Find a Physician page. Click on the links below:
And, even though you are rare, you are not alone. You can find other desmoid patients at the Facebook group Desmoidian.