Talking about Desmoid Tumors
Updated: Aug 19
Sharing about desmoid tumors isn't easy, especially when it's personal. However, your effort to connect with others and create awareness about desmoid tumors is vital. Your voice is so valuable in communicating about this disease and helping people understand its impact.
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 talk about desmoid tumors.
1) YOUR story.
All desmoid tumor patients have a story to tell. Once you register as an RFA participant, you can include your story on your fundraising page when you share it.
Maybe you don't feel comfortable. Maybe it's just too close to home. That's ok. Below we're including other journeys that you can share instead.
2) Stories of other patients who battling/have batted desmoid tumors*.
* The stories and journeys listed above are personal. They do not reflect the opinions or recommendations of the Desmoid Tumor Research Foundation.