Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding carcinoid syndrome is limited due to its rarity and the variability in clinical presentations. With fewer than 200,000 cases reported in the U.S., systematic studies have been scarce. Additionally, the overlapping symptoms with other gastrointestinal conditions complicate the clinical characterization, leaving many aspects of the syndrome inadequately defined. This does not diminish the reality of your experience; many patients face similar challenges in navigating their care.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
Currently, there are three orphan drugs associated with carcinoid syndrome. Lanreotide acetate is FDA-approved for treatment, while Octreotide (acetate) and paltusotine are designated for development. There are also eight active clinical trials exploring various aspects of carcinoid syndrome. You can find more information about these trials at ClinicalTrials.gov by searching for 'carcinoid syndrome'. This ongoing research offers hope for improved understanding and treatment options in the future.
Actionable guidance for navigating care for carcinoid syndrome
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding carcinoid syndrome is limited due to its rarity and the variability in clinical presentations. With fewer than 200,000 cases reported in the U.S., systematic studies have been scarce. Additionally, the overlapping symptoms with other gastrointestinal conditions complicate the clinical characterization, leaving many aspects of the syndrome inadequately defined. This does not diminish the reality of your experience; many patients face similar challenges in navigating their care.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
Currently, there are three orphan drugs associated with carcinoid syndrome. Lanreotide acetate is FDA-approved for treatment, while Octreotide (acetate) and paltusotine are designated for development. There are also eight active clinical trials exploring various aspects of carcinoid syndrome. You can find more information about these trials at ClinicalTrials.gov by searching for 'carcinoid syndrome'. This ongoing research offers hope for improved understanding and treatment options in the future.
Actionable guidance for navigating care for carcinoid syndrome
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding carcinoid syndrome is limited due to its rarity and the variability in clinical presentations. With fewer than 200,000 cases reported in the U.S., systematic studies have been scarce. Additionally, the overlapping symptoms with other gastrointestinal conditions complicate the clinical characterization, leaving many aspects of the syndrome inadequately defined. This does not diminish the reality of your experience; many patients face similar challenges in navigating their care.
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
Currently, there are three orphan drugs associated with carcinoid syndrome. Lanreotide acetate is FDA-approved for treatment, while Octreotide (acetate) and paltusotine are designated for development. There are also eight active clinical trials exploring various aspects of carcinoid syndrome. You can find more information about these trials at ClinicalTrials.gov by searching for 'carcinoid syndrome'. This ongoing research offers hope for improved understanding and treatment options in the future.
Actionable guidance for navigating care for carcinoid syndrome
To navigate your care effectively, consider seeking a specialist in neuroendocrine tumors, particularly an oncologist with experience in carcinoid syndrome. You may also benefit from connecting with a genetic counselor, especially if there are concerns about familial patterns. While no specific patient organizations are currently identified for carcinoid syndrome, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Participating in clinical trials may also offer access to cutting-edge treatments and support.
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
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 — 4 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 carcinoid syndrome
Updated Feb 16, 2026
A case report details a nonmetastatic pulmonary carcinoid tumor presenting with carcinoid syndrome, despite negative 5-HIAA levels. This finding may influence diagnostic approaches for carcinoid syndrome in similar cases.