Smouldering systemic mastocytosis is a type of systemic mastocytosis (SM). This clonal hematologic disease, with a slow progression, results in an accumulation of neoplastic mast cells in the visceral...
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
The limited documentation surrounding smouldering systemic mastocytosis reflects its rarity and the complexity of mast cell disorders. Because this condition affects a small number of individuals, comprehensive clinical studies have been challenging to conduct. Additionally, the clinical features may overlap with other mast cell-related conditions, complicating diagnosis and characterization.
To navigate your care effectively, consider consulting a hematologist with expertise in mast cell disorders. They can provide tailored management strategies and monitor your condition. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer support and information. Additionally, inquire about any available natural history studies or registries that may provide further insights into your condition.
There are several orphan drugs approved for smouldering systemic mastocytosis, including avapritinib, Cromolyn sodium, and midostaurin. Additionally, several drugs are designated for development, such as bezuclastinib and a highly selective inhibitor of the tyrosine kinase BTK. Unfortunately, there are currently no active clinical trials available for this condition. For further information on ongoing research, you can search ClinicalTrials.gov for updates.
Actionable guidance for navigating care for Smouldering systemic mastocytosis
To navigate your care effectively, consider consulting a hematologist with expertise in mast cell disorders. They can provide tailored management strategies and monitor your condition. While there are no specific patient organizations identified, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can offer support and information. Additionally, inquire about any available natural history studies or registries that may provide further insights into your condition.
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.
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Organizations with orphan designations or approved therapies for this disease