About Us

The US Hereditary Angioedema Association (HAEA) is a 501 (c)(3) non-profit advocacy and research organization serving people living with the rare genetic condition, Hereditary Angioedema (HAE), and their families. Founded and staffed by people with HAE and caregivers, the US HAEA is committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which include helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade the quality of life through improving diagnosis and knowledge of the condition, and encouraging a tailored, patient-focused use of available therapeutic options. The HAEA is product and company neutral, and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

Our Mission Mountain

To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering patient access to suitable treatment, and fostering ground-breaking research that includes searching for a cure.

Our Vision Eye

Unrestricted access to therapy so people affected by HAE are unburdened by symptoms and able to experience life to the fullest.

Our Values Hands

To fulfill our community's highest priority needs with innovative programs, services, and activities that are delivered with an extraordinary level of empathy, kindness, and compassion.

Our History

25th anniversary

Founded in 1999, the US HAEA was created by people with HAE and their caregivers who wanted to change the quality of life for others, who like them, had spent years suffering through the pain and misunderstanding of HAE. Today, our organization connects more than 8,000 people with HAE and their caregivers across the United States with valuable support services, advocacy initiatives, medical research, and more. We remain just as passionate about everything we do, as we recognize and value the social impact each HAEA member can have on improving the lives of our entire community.

Read about our impact in our latest Annual Report.

Our Impact

HAE International

A Global Network

HAE International (HAEi) is the international umbrella organization for the world's hereditary angioedema patient groups, including the US HAEA. As a non-profit worldwide network, HAEi is dedicated to raising awareness of C1-Inhibitor deficiencies around the world. The international organization was established to promote cooperation, coordination and information sharing between national HAE patient associations and specialists to facilitate the availability of effective diagnosis and management of HAE throughout the world.

The US HAEA is proud to support the work of the HAEi. Our President, Anthony J. Castaldo, also serves as President of HAEi, and a member of our Board of Directors, Henrik Balle Boysen of Denmark, serves as the Executive Director of HAEi.

For more information, please visit www.haei.org.