A rare malignant neoplasm of the soft tissues. It is typically a disease of children and young adults. Most commonly occurs in the paravertebral region, chest wall, pelvis and lower extremities. Treat...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation for extraskeletal Ewing sarcoma is limited due to its rarity, affecting fewer than 5 people per million annually. The lack of systematic clinical studies and the absence of identified genetic factors have hindered comprehensive understanding and characterization of this condition. This makes it challenging for patients and families to find detailed information and support.
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
There are several orphan drugs in development for extraskeletal Ewing sarcoma, including (E)-N¿-(1-(5-Chloro-2-hydroxy phenyl)Ethylidene)-3-((4-Methyl Piperazin-1-yl) Sulfonyl) Benzohydrazide Mesylate and antinuclear antibody conjugated liposomal doxorubicin. Additionally, there is one active clinical trial for this condition. You can explore ongoing research and potential participation opportunities at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=extraskeletal%20Ewing%20sarcoma.
Actionable guidance for navigating care for extraskeletal Ewing sarcoma
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for extraskeletal Ewing sarcoma is limited due to its rarity, affecting fewer than 5 people per million annually. The lack of systematic clinical studies and the absence of identified genetic factors have hindered comprehensive understanding and characterization of this condition. This makes it challenging for patients and families to find detailed information and support.
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
There are several orphan drugs in development for extraskeletal Ewing sarcoma, including (E)-N¿-(1-(5-Chloro-2-hydroxy phenyl)Ethylidene)-3-((4-Methyl Piperazin-1-yl) Sulfonyl) Benzohydrazide Mesylate and antinuclear antibody conjugated liposomal doxorubicin. Additionally, there is one active clinical trial for this condition. You can explore ongoing research and potential participation opportunities at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=extraskeletal%20Ewing%20sarcoma.
Actionable guidance for navigating care for extraskeletal Ewing sarcoma
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation for extraskeletal Ewing sarcoma is limited due to its rarity, affecting fewer than 5 people per million annually. The lack of systematic clinical studies and the absence of identified genetic factors have hindered comprehensive understanding and characterization of this condition. This makes it challenging for patients and families to find detailed information and support.
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
There are several orphan drugs in development for extraskeletal Ewing sarcoma, including (E)-N¿-(1-(5-Chloro-2-hydroxy phenyl)Ethylidene)-3-((4-Methyl Piperazin-1-yl) Sulfonyl) Benzohydrazide Mesylate and antinuclear antibody conjugated liposomal doxorubicin. Additionally, there is one active clinical trial for this condition. You can explore ongoing research and potential participation opportunities at ClinicalTrials.gov using this link: https://clinicaltrials.gov/search?cond=extraskeletal%20Ewing%20sarcoma.
Actionable guidance for navigating care for extraskeletal Ewing sarcoma
To navigate your treatment effectively, consider seeking a specialist in soft tissue sarcomas or a medical oncologist with expertise in Ewing sarcoma. While there are currently no identified patient organizations specifically for extraskeletal Ewing sarcoma, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, inquire about participation in clinical trials, which may offer access to new therapies and contribute to research efforts.
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 30, 2026
Consider asking your healthcare providers these condition-specific questions
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 — 3 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.