About the HAEA

The US Hereditary Angioedema Association (US HAEA) represents a new breed of rare disease patient advocacy organization. In 1999, one patient's personal Internet page that chronicled one family's struggle to cope with HAE grew into a national patient group that shared their HAE-related experiences through an online discussion group. Group members then joined together to organize as the US HAEA. Our Mission Statement provides a clear understanding of our goals and purpose: Research, Advocacy, Compassion, Empowerment.

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 state-of-the-art patient services and research organization.  

A significant number of HAE patients continue to be misdiagnosed with histamine-mediated allergic angioedema, often resulting in unnecessary exploratory surgical procedures.  They are often treated with non-effective pharmacologic approaches, which results in loss of work and school time.  The US HAEA is committed to seeing patients lead a full and healthy life through research and education.  Education without practice change is ineffective, and the goal of this program is to help provide clinically sound and rational approached to the diagnosis and management of HAE including promoting a cooperative effort between clinicians, patients, and patient caregivers to develop patient-centric treatment strategies.  An accurate diagnosis which then leads to effective treatment is crucial to the social, economic, emotional and physical well-being of every HAE patient.

New educational initiatives, such as The US HAEA Educational Initiative: Consensus Guidelines on Improving the Management of HAE, are just some of the ways the Association keeps up with the quickly evolving field of HAE. We encourage you to learn more about the US HAEA's services and programs, including extensive Patient Services, a Scientific Registry to study HAE genetics and find a cure, and an Image Repository whose images will increase awareness and understanding of this disease.

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