Just diagnosed with Desmoid tumor?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Desmoid tumor, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Desmoid tumor hub →Overview
Desmoid tumor is a rare condition. Also known as Aggressive fibromatosis, Desmoid type fibromatosis. Tomeko brings together the specialists, research, clinical trials, treatments and community for Desmoid tumor so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:873 · OMIM 135290 · ICD-10 D48.1 · GARD 0001820
Find care for Desmoid tumor
Authoritative references for Desmoid tumor
Research & market landscape for Desmoid tumor
Following Desmoid tumor for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Desmoid tumor — the real-world landscape behind the condition, in one place.
- Latest Desmoid tumor research on PubMed ↗
- Recruiting Desmoid tumor trials on ClinicalTrials.gov ↗
- Explore the Desmoid tumor research & specialist footprint on Tomeko
Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for Desmoid tumor and every rare condition. See how Tomeko works with industry →
Common questions
What is Desmoid tumor?
Desmoid tumor is a rare condition. Also known as Aggressive fibromatosis, Desmoid type fibromatosis. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Desmoid tumor together in one place.
What are the symptoms of Desmoid tumor?
Symptoms of Desmoid tumor vary from person to person. For a reviewed, plain-language overview see the authoritative references below (NIH GARD, Orphanet), and discuss your own symptoms with a clinician who treats Desmoid tumor.
How is Desmoid tumor treated?
Treatment for Desmoid tumor depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Desmoid tumor, and review current options with them.
What causes Desmoid tumor — is it genetic?
The cause and inheritance of Desmoid tumor are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Desmoid tumor can explain what it means for you and your family.
I was just diagnosed with Desmoid tumor — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Desmoid tumor, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Desmoid tumor?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Desmoid tumor, filtered to your area.
Are there clinical trials for Desmoid tumor?
Tomeko shows live, recruiting studies for Desmoid tumor from ClinicalTrials.gov on the hub.
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