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About Us

Research, Advocacy, Compassion, Empowerment: US HAEAThe US Hereditary Angioedema Association

Welcome to the US Hereditary Angioedema Association, Inc. (US HAEA). Founded and staffed by HAE patients and HAE patient caregivers, we are a non-profit patient advocacy organization dedicated to serving persons with angioedema. The Association provides HAE patients and their families with a support network and a wide range of services including physician referrals, and individualized patient support. Our goal is to increase awareness of Hereditary Angioedema by providing patients and physicians with authoritative and readily accessible information. We are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.

Hereditary angioedema is a rare disease resulting from a genetic deficiency of the blood-based protein C1-Inhibitor. HAE patients experience attacks of edema (swelling) in the hands, feet, abdomen, face and /or throat (airway). Swelling that involves the throat is a major medical emergency, because it can close the airway and cause death by suffocation.

The US HAEA reaches an estimated 6500+ HAE sufferers in the US with national and regional patient conferences, a quarterly newsletter, online patient discussion group, Facebook page, and patient/healthcare provider education.

We invite you to explore our website and please be sure to join our Association (it’s free) so that you can stay up-to-date on the latest HAE information and US HAEA events.

If you have any questions, please email us at info@haea.org or call us toll free at 866-798-5598.