A neuroblastoma that involves the retroperitoneal space.
Comprehensive, easy-to-understand information about this condition
How we create this content →Documentation on retroperitoneal neuroblastoma is limited primarily due to its rarity, which affects fewer than 1 in 100,000 children. This rarity results in fewer systematic clinical studies and a lack of comprehensive data on clinical features and genetic underpinnings. As research continues, there is hope that a clearer understanding of this condition will emerge.
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
Currently, there are three FDA-approved orphan drugs for retroperitoneal neuroblastoma: dinutuximab, eflornithine, and naxitamab-gqgk. Additionally, several drugs are designated for development, including a genetically modified salmonella and various monoclonal antibodies. While no clinical trials are currently available, you can explore potential studies and updates at ClinicalTrials.gov for future opportunities.
Actionable guidance for navigating care for retroperitoneal neuroblastoma
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Documentation on retroperitoneal neuroblastoma is limited primarily due to its rarity, which affects fewer than 1 in 100,000 children. This rarity results in fewer systematic clinical studies and a lack of comprehensive data on clinical features and genetic underpinnings. As research continues, there is hope that a clearer understanding of this condition will emerge.
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
Currently, there are three FDA-approved orphan drugs for retroperitoneal neuroblastoma: dinutuximab, eflornithine, and naxitamab-gqgk. Additionally, several drugs are designated for development, including a genetically modified salmonella and various monoclonal antibodies. While no clinical trials are currently available, you can explore potential studies and updates at ClinicalTrials.gov for future opportunities.
Actionable guidance for navigating care for retroperitoneal neuroblastoma
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Documentation on retroperitoneal neuroblastoma is limited primarily due to its rarity, which affects fewer than 1 in 100,000 children. This rarity results in fewer systematic clinical studies and a lack of comprehensive data on clinical features and genetic underpinnings. As research continues, there is hope that a clearer understanding of this condition will emerge.
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
Currently, there are three FDA-approved orphan drugs for retroperitoneal neuroblastoma: dinutuximab, eflornithine, and naxitamab-gqgk. Additionally, several drugs are designated for development, including a genetically modified salmonella and various monoclonal antibodies. While no clinical trials are currently available, you can explore potential studies and updates at ClinicalTrials.gov for future opportunities.
Actionable guidance for navigating care for retroperitoneal neuroblastoma
To navigate your care for retroperitoneal neuroblastoma, consider consulting with a pediatric oncologist who specializes in rare tumors. Resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information and support. Additionally, while there are currently no patient organizations identified specifically for this condition, staying connected with broader cancer support networks may be beneficial. Keep an eye out for any natural history studies or registries that may arise as research progresses.
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
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
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.