• RFA Team

Talking about desmoid tumors

Updated: Jun 29

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 talk about desmoid tumors.

Your effort to connect with others and create awareness about desmoid tumors is so important. Your voices are so valuable in communicating about this disease and helping people understand its impact.


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.

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.

VIDEOS about other survivor journeys:

BLOGS about other desmoid tumor journeys:




* The stories and journeys listed above are personal. They do not reflect the opinions or recommendations of the Desmoid Tumor Research Foundation.


Thank you for your support


The Desmoid Tumor Research Foundation | (215) 760-3977 | P.O. Box 273, Suffern, NY 10901

©2020 Desmoid Tumor Research Foundation. All rights reserved.

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