A syndrome characterized by leakage of intravascular fluids into the extravascular space. This syndrome is observed in patients who demonstrate a state of generalized leaky capillaries following shock...
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding capillary leak syndrome is primarily due to its extreme rarity, affecting fewer than 1 in 1,000,000 people. This rarity results in a lack of systematic clinical studies and comprehensive characterization of the condition. Additionally, the absence of identified genetic factors and defined inheritance patterns complicates the understanding of its clinical features.
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this condition.
Currently, there is an orphan drug in development, a fully human monoclonal antibody that activates the Tie2 receptor, which may offer potential therapeutic benefits for capillary leak syndrome. However, no clinical trials are available at this time. For updates on ongoing research and potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for capillary leak syndrome
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding capillary leak syndrome is primarily due to its extreme rarity, affecting fewer than 1 in 1,000,000 people. This rarity results in a lack of systematic clinical studies and comprehensive characterization of the condition. Additionally, the absence of identified genetic factors and defined inheritance patterns complicates the understanding of its clinical features.
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this condition.
Currently, there is an orphan drug in development, a fully human monoclonal antibody that activates the Tie2 receptor, which may offer potential therapeutic benefits for capillary leak syndrome. However, no clinical trials are available at this time. For updates on ongoing research and potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for capillary leak syndrome
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding capillary leak syndrome is primarily due to its extreme rarity, affecting fewer than 1 in 1,000,000 people. This rarity results in a lack of systematic clinical studies and comprehensive characterization of the condition. Additionally, the absence of identified genetic factors and defined inheritance patterns complicates the understanding of its clinical features.
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this condition.
Currently, there is an orphan drug in development, a fully human monoclonal antibody that activates the Tie2 receptor, which may offer potential therapeutic benefits for capillary leak syndrome. However, no clinical trials are available at this time. For updates on ongoing research and potential clinical trials, you can search ClinicalTrials.gov for relevant studies.
Actionable guidance for navigating care for capillary leak syndrome
To navigate capillary leak syndrome, consider consulting with a specialist in vascular medicine or a hematologist with experience in rare vascular disorders. While there are no specific patient organizations identified, resources such as the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, exploring opportunities for participation in natural history studies or registries may help contribute to the understanding of this 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 7, 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. 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.