Dermatofibrosarcoma protuberans (DFSP) is a rare infiltrating soft tissue sarcoma, generally of low grade malignancy, arising from the dermis of the skin and characteristically associated with a speci...
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding dermatofibrosarcoma protuberans is primarily due to its rarity, affecting fewer than 5 in 10,000 individuals. This rarity restricts the scope of systematic clinical studies and comprehensive phenotypic characterization. Additionally, the genetic basis of DFSP has not been fully elucidated, contributing to the challenges in gathering extensive clinical data.
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Currently, there is one FDA-approved treatment for DFSP: imatinib mesylate. Additionally, there are 11 active clinical trials investigating various aspects of the disease. These trials may offer opportunities for patients to access novel therapies and contribute to the understanding of DFSP. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=dermatofibrosarcoma%20protuberans.
Actionable guidance for navigating care for dermatofibrosarcoma protuberans
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding dermatofibrosarcoma protuberans is primarily due to its rarity, affecting fewer than 5 in 10,000 individuals. This rarity restricts the scope of systematic clinical studies and comprehensive phenotypic characterization. Additionally, the genetic basis of DFSP has not been fully elucidated, contributing to the challenges in gathering extensive clinical data.
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Currently, there is one FDA-approved treatment for DFSP: imatinib mesylate. Additionally, there are 11 active clinical trials investigating various aspects of the disease. These trials may offer opportunities for patients to access novel therapies and contribute to the understanding of DFSP. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=dermatofibrosarcoma%20protuberans.
Actionable guidance for navigating care for dermatofibrosarcoma protuberans
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding dermatofibrosarcoma protuberans is primarily due to its rarity, affecting fewer than 5 in 10,000 individuals. This rarity restricts the scope of systematic clinical studies and comprehensive phenotypic characterization. Additionally, the genetic basis of DFSP has not been fully elucidated, contributing to the challenges in gathering extensive clinical data.
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Currently, there is one FDA-approved treatment for DFSP: imatinib mesylate. Additionally, there are 11 active clinical trials investigating various aspects of the disease. These trials may offer opportunities for patients to access novel therapies and contribute to the understanding of DFSP. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=dermatofibrosarcoma%20protuberans.
Actionable guidance for navigating care for dermatofibrosarcoma protuberans
To navigate your care for dermatofibrosarcoma protuberans, consider seeking a specialist in soft tissue sarcomas or a surgical oncologist experienced in treating DFSP. Engaging with a genetic counselor may also provide insights, especially if there are concerns about familial patterns. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer valuable information. Additionally, participating in clinical trials may be an option; check the ClinicalTrials.gov link for opportunities.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 31, 2026
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
European rare disease database
Genetic and Rare Diseases Info Center
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 1 company has orphan drug designations for this disease
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