If you’ve been diagnosed with a desmoid tumor, please know that you are not alone.
The mission of The Desmoid Tumor Research Foundation is to aggressively fund research to accelerate the development of improved therapies, and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness, and support.
Here are important first steps for you in dealing with this new diagnosis:
1- Learn as much as you can about desmoid tumors to ensure that you get the best care possible. YOU are your best advocate.
- Visit Diagnosis and Treatment to learn more about desmoid tumors.
- Check out some FAQs (including a series of videos by Dr. Breelyn Wilky) about desmoid tumors and treatment options.
- Review the current clinical trials and discuss them with your doctor.
2- Receive regular updates about the latest research findings, clinical trials, and DTRF activities.
- Sign up for updates from the Desmoid Tumor Research Foundation.
3- Find a sarcoma specialist.
- Finding the right doctor who can partner with you is essential. It is recommended that you be evaluated in a major academic hospital with experts in sarcoma, by a multi-disciplinary team including a surgeon, medical oncologist, radiation oncologist, geneticist, and nurse.
- Visit Find a Physician to find a specialist near you.
4- Help advance desmoid tumor research by participating in our patient registry.
- There is a great need to gather more information about the patient experience throughout the desmoid journey. Simply by anonymously answering questions through the registry, you can help those struggling with desmoid tumors.
- Our patient registry is up and running at https://dtrf.iamrare.org/. Email us at firstname.lastname@example.org if you have any questions.
5- If you are contemplating surgery, fill out a consent form online to have some of your excess tumor tissue donated which will help accelerate desmoid tumor research.
- The DTRF in partnership with Pattern.org, is supporting the Cancer Cell Line Project at the Broad Institute of MIT and Harvard (www.broadinstitute.org). The goal in creating cell lines is to speed the development of new therapies and diagnostics.
- If you or a patient you know has an upcoming surgery, you can visit Pattern.org to learn more about the process of donating tissue to this project.
6- Get connected.
- Visit the independently-run Facebook group called “Desmoidian” and connect with other patients. They may be able to provide additional support.
- Follow DTRF on Facebook.
7- Save the date!
- Join us for our Patient Meeting and Running for Answers 5K in Philadelphia during the 4th weekend in September.
- Read about the DTRF Patient Meeting which provides access to information and community. You’ll have opportunities to connect with other patients, ask the experts questions and leave the weekend feeling hopeful.
Do you live in Canada?
If you live in Canada, get connected through the Desmoid Tumour Foundation of Canada at www.desmoidcanada.com.