A benign or malignant sympathetic paraganglioma arising from paraganglia outside the adrenal gland. Clinical symptoms are related to secretion of catecholamines. Representative examples include the su...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding extra-adrenal sympathetic paraganglioma is limited primarily due to its rarity. Conditions like this often affect fewer than a few thousand individuals worldwide, making systematic clinical studies challenging. Additionally, the lack of identified genetic markers and the variability in clinical presentation further complicate comprehensive documentation.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
Currently, there are several orphan drugs designated for extra-adrenal sympathetic paraganglioma, including vorasidenib, which is FDA-approved. Other drugs in development include various compounds targeting tumor growth and symptom management. Unfortunately, there are no active clinical trials available at this time. For more information on ongoing research, you can check ClinicalTrials.gov for updates.
Actionable guidance for navigating care for extra-adrenal sympathetic paraganglioma
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding extra-adrenal sympathetic paraganglioma is limited primarily due to its rarity. Conditions like this often affect fewer than a few thousand individuals worldwide, making systematic clinical studies challenging. Additionally, the lack of identified genetic markers and the variability in clinical presentation further complicate comprehensive documentation.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
Currently, there are several orphan drugs designated for extra-adrenal sympathetic paraganglioma, including vorasidenib, which is FDA-approved. Other drugs in development include various compounds targeting tumor growth and symptom management. Unfortunately, there are no active clinical trials available at this time. For more information on ongoing research, you can check ClinicalTrials.gov for updates.
Actionable guidance for navigating care for extra-adrenal sympathetic paraganglioma
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding extra-adrenal sympathetic paraganglioma is limited primarily due to its rarity. Conditions like this often affect fewer than a few thousand individuals worldwide, making systematic clinical studies challenging. Additionally, the lack of identified genetic markers and the variability in clinical presentation further complicate comprehensive documentation.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
Currently, there are several orphan drugs designated for extra-adrenal sympathetic paraganglioma, including vorasidenib, which is FDA-approved. Other drugs in development include various compounds targeting tumor growth and symptom management. Unfortunately, there are no active clinical trials available at this time. For more information on ongoing research, you can check ClinicalTrials.gov for updates.
Actionable guidance for navigating care for extra-adrenal sympathetic paraganglioma
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors or an oncologist with experience in paragangliomas. Engaging with a genetic counselor may also be beneficial, even though no specific genetic basis has been established. For resources, visit the Genetic and Rare Diseases Information Center at rarediseases.info.nih.gov for additional support and information. While there are no patient organizations identified specifically for this condition, connecting with general cancer support groups may provide community and resources.
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.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.