top of page

Talking about desmoid tumors

Sharing about desmoid tumors isn't easy. Many people have not heard of the disease and those who have may not understand its effect on day-to-day life.

How can you convey the gravity of this disease and encourage your community to donate or participate in RFA? Here are a few helpful hints about how to talking about desmoid tumors.


YOUR story. All desmoid tumor patients have a story to tell. Once you register as a live or virtual RFA participant, you can include your story on your fundraising page when you share it.

VIDEOS about survivor journeys:

BLOGS about desmoid tumor journeys:

bottom of page