Comprehensive, easy-to-understand information about this condition
How we create this content →Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
Genetic and Rare Diseases Info Center
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
Genetic and Rare Diseases Info Center
The documentation surrounding pheochromocytoma is limited primarily due to its rarity, which affects fewer than 1 in 100,000 people. This extreme rarity leads to fewer systematic clinical studies and a lack of comprehensive data on its clinical features and management. Additionally, the genetic basis of the condition is still being explored, contributing to the gaps in clinical characterization.
To navigate your care effectively, consider seeking a specialist in endocrinology, particularly one with expertise in adrenal tumors. Genetic counseling is also advisable given the known genetic factors, especially if there is a family history of related conditions. You can connect with the Pheo Para Alliance at https://pheopara.org for support and resources. Additionally, inquire about participating in any available registries or natural history studies to contribute to the understanding of this condition.
Currently, there are 58 active clinical trials investigating various aspects of pheochromocytoma. These trials may explore new treatment options and management strategies. For more information on ongoing studies, you can visit ClinicalTrials.gov and search for pheochromocytoma. This research landscape offers hope for improved understanding and treatment of the condition.
Actionable guidance for navigating care for pheochromocytoma
To navigate your care effectively, consider seeking a specialist in endocrinology, particularly one with expertise in adrenal tumors. Genetic counseling is also advisable given the known genetic factors, especially if there is a family history of related conditions. You can connect with the Pheo Para Alliance at https://pheopara.org for support and resources. Additionally, inquire about participating in any available registries or natural history studies to contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the pheochromocytoma community
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
Online Mendelian Inheritance in Man
Genetic and Rare Diseases Info Center
3 peer-reviewed sources from PubMed
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.
AI-curated news mentioning pheochromocytoma
Updated Feb 9, 2026
Recent research highlights advancements in precision imaging and therapies for paragangliomas and pheochromocytomas, focusing on molecular diagnostics and imaging-guided management. These developments may enhance treatment strategies for patients with these rare tumors.