Overview
Non-histaminic angioedema is a group of rare conditions that cause sudden, recurring episodes of swelling beneath the skin. Unlike the more common allergic swelling (which involves a chemical called histamine), this type of swelling is driven by different pathways in the body — most often by a substance called bradykinin. The swelling can affect the face, lips, throat, hands, feet, belly, and genitals. It is also known as bradykinin-mediated angioedema or non-allergic angioedema. The most well-known form is Hereditary Angioedema (HAE), which is caused by a deficiency or malfunction of a protein called C1-inhibitor, or by mutations in other genes like FXII, ANGPT1, PLG, KNG1, MYOF, or HS3ST6. Because histamine is not involved, standard allergy treatments like antihistamines and epinephrine often do not work well, which can make attacks dangerous and difficult to manage. Symptoms come and go unpredictably and can last from hours to several days. Swelling in the throat is a medical emergency because it can block breathing. With the right diagnosis and modern treatments — including medications that target the bradykinin pathway — most people can significantly reduce the number and severity of attacks and live full lives. Early and accurate diagnosis is critical because this condition is often mistaken for allergic reactions for years.
Key symptoms:
Sudden swelling under the skin, especially of the face, lips, hands, feet, or genitalsSwelling inside the throat that can make breathing or swallowing difficultSevere cramping stomach pain caused by swelling in the intestinal wallNausea, vomiting, or diarrhea during abdominal attacksSwelling that does not itch (unlike allergic hives)Episodes that last 2 to 5 days without treatmentSkin tightness or a feeling of pressure in the swollen areaA non-itchy, blotchy rash (erythema marginatum) that sometimes appears before an attackFatigue and discomfort during and after episodesAttacks triggered by stress, minor injury, illness, hormonal changes, or certain medications
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
2 eventsUniversity of Cincinnati — PHASE3
University Hospital, Grenoble
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Non-histaminic angioedema.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Non-histaminic angioedema at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Non-histaminic angioedema.
Community
No community posts yet. Be the first to share your experience with Non-histaminic angioedema.
Start the conversation →Latest news about Non-histaminic angioedema
Disease timeline:
New recruiting trial: Bradykinin-degradating Enzymes Activities in Angiotensin-Converting Enzyme Inhibitors-associated Angioedema
A new clinical trial is recruiting patients for Non-histaminic angioedema
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which specific genetic subtype of non-histaminic angioedema do I have, and what does that mean for my treatment options?,What emergency medication should I carry, and how do I use it if I have a throat attack?,Should I start long-term preventive treatment, and which option is best for my situation?,Are my family members at risk, and should they be tested?,What triggers should I try to avoid, and are there any medications I should never take?,What should I do if I need surgery or dental work — do I need special precautions?,Are there clinical trials or newer treatments I should know about?
Common questions about Non-histaminic angioedema
What is Non-histaminic angioedema?
Non-histaminic angioedema is a group of rare conditions that cause sudden, recurring episodes of swelling beneath the skin. Unlike the more common allergic swelling (which involves a chemical called histamine), this type of swelling is driven by different pathways in the body — most often by a substance called bradykinin. The swelling can affect the face, lips, throat, hands, feet, belly, and genitals. It is also known as bradykinin-mediated angioedema or non-allergic angioedema. The most well-known form is Hereditary Angioedema (HAE), which is caused by a deficiency or malfunction of a prote
Which specialists treat Non-histaminic angioedema?
10 specialists and care centers treating Non-histaminic angioedema are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.