Hereditary angioedema type 1 (HAE 1) is a form of hereditary angioedema characterized by acute edema in subcutaneous tissues, viscera and/or the upper airway.
Comprehensive, easy-to-understand information about this condition
How we create this content →The limited documentation surrounding hereditary angioedema type 1 is primarily due to its rarity, affecting fewer than 10,000 individuals in the U.S. This scarcity has resulted in fewer systematic clinical studies and a lack of comprehensive phenotype documentation. As research continues, there is hope for better understanding and management of this condition.
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
There are several orphan drugs approved for use in managing hereditary angioedema type 1, including C1 esterase inhibitor (human), donidalorsen, ecallantide, icatibant, and lanadelumab-flyo. Additionally, there are drugs in development such as an adeno-associated virus vector targeting the hSERPING cDNA and small interfering RNA targeting prekallikrein. Currently, there are 35 active clinical trials investigating various aspects of HAE 1. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=hereditary%20angioedema%20type%201.
Actionable guidance for navigating care for hereditary angioedema type 1
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding hereditary angioedema type 1 is primarily due to its rarity, affecting fewer than 10,000 individuals in the U.S. This scarcity has resulted in fewer systematic clinical studies and a lack of comprehensive phenotype documentation. As research continues, there is hope for better understanding and management of this condition.
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
There are several orphan drugs approved for use in managing hereditary angioedema type 1, including C1 esterase inhibitor (human), donidalorsen, ecallantide, icatibant, and lanadelumab-flyo. Additionally, there are drugs in development such as an adeno-associated virus vector targeting the hSERPING cDNA and small interfering RNA targeting prekallikrein. Currently, there are 35 active clinical trials investigating various aspects of HAE 1. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=hereditary%20angioedema%20type%201.
Actionable guidance for navigating care for hereditary angioedema type 1
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The limited documentation surrounding hereditary angioedema type 1 is primarily due to its rarity, affecting fewer than 10,000 individuals in the U.S. This scarcity has resulted in fewer systematic clinical studies and a lack of comprehensive phenotype documentation. As research continues, there is hope for better understanding and management of this condition.
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
There are several orphan drugs approved for use in managing hereditary angioedema type 1, including C1 esterase inhibitor (human), donidalorsen, ecallantide, icatibant, and lanadelumab-flyo. Additionally, there are drugs in development such as an adeno-associated virus vector targeting the hSERPING cDNA and small interfering RNA targeting prekallikrein. Currently, there are 35 active clinical trials investigating various aspects of HAE 1. For more information, you can explore the active trials at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=hereditary%20angioedema%20type%201.
Actionable guidance for navigating care for hereditary angioedema type 1
To navigate hereditary angioedema type 1, seek out specialists in allergy and immunology who have experience with angioedema disorders. Consider participating in clinical trials, as they may provide access to cutting-edge treatments and contribute to valuable research. You can find more information about ongoing trials at ClinicalTrials.gov. Although no specific patient organizations are identified for HAE 1, resources such as the National Organization for Rare Disorders (NORD) at rarediseases.org may offer support and guidance.
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.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.