About Us

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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.

Our History

In 1999, one patient’s personal Internet page that chronicled a family’s struggle to cope with HAE quickly grew into a patient group that shared their HAE-related experiences through a Yahoo email service. The increasing sophistication of Internet search engines enabled more patients to find the HAE email group, and the members banded together to form the US HAEA.

Soon after, a Patient Services team was formed. This group of volunteers began responding to patient requests for help and answered the call to action to solve HAE problems.  Seven Patient Services staff (Representatives) now serve HAE patients full-time.

The US HAEA’s growth since its inception has been exponential, but our core principles remain the same – caring, compassion and kindness. As we look ahead to the future, the US HAEA is proud to be known as a patient services and research organization. Today, 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, various social media resources, 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 or call us toll free at 866-798-5598.