HAE and HAEi

Hereditary angioedema (HAE) is a rare disease that affects about 1 in 10,000 to 1 in 50,000 people worldwide.1,2

HAE causes episodes or attacks of swelling (edema) to various parts of the body, including the hands, feet, face and airway. Swelling in the abdomen/ intestinal wall can often result in excruciating abdominal pain, nausea and vomiting.1,3,4 HAE can be life threatening in the case of throat/ airway swelling.

On average it can take about 13 years5 for a patient to be diagnosed with HAE as the symptoms are similar to those of many other common conditions such as allergies or appendicitis. By the time HAE is diagnosed correctly, the patient has often seen a number of physicians, may have undergone unnecessary operations, and could have felt a major impact on his or her quality of life.

There are modern effective therapies which help stop the attacks once started or prevent attacks from happening. These medications are not consistently available to all people with HAE.

>> For more information, visit haei.org



    1. Agostoni A, Aygoren-Pursun E, Binkley KE, et al. Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond. J Allergy Clin Immunol 2004; 114(3 Suppl): S51-131
    2. Bowen T, Cicardi M, Bork K, et al. Hereditary angioedema: a current state-of-the-art review, VII: Canadian Hungarian 2007 International Consensus Algorithm for the Diagnosis, Therapy, and Management of Hereditary Angioedema. Ann Allergy Asthma Immunol 2008; 100(1 Suppl 2): S30-40
    3. Bork K, Meng G, Staubach P, Hardt J. Hereditary angioedema: new findings concerning symptoms, affected organs, and course. Am J Med 2006; 119: 267-74
    4. Frank MM, Gelfand JA, Atkinson JP. Hereditary angioedema: the clinical syndrome and its management. Ann Intern Med 1976; 84: 580–93
    5. Roche O, Blanch A, Caballero T et al. Hereditary angioedema due to C1 inhibitor deficiency: patient registry and approach to the prevalence in Spain. Ann Allergy Asthma Immunol 2005; 94:498–503.


HAE International (HAEi) is a global non-profit umbrella organization for the worlds HAE patient associations.

HAEi, and our member organizations, is dedicated to improving the lives of people with HAE. HAEi is dedicated to supporting HAE organizations and people with HAE around the world, raising awareness of HAE to improve time to diagnosis, and fiercely advocating for the approval and reimbursement of lifesaving therapies to everyone suffering from HAE.

>> For more information on HAEi, visit haei.org