HAEi is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema (HAE) and improving the lives of people with HAE

HAE International (HAEi) is a global non-profit network of patient associations dedicated to improving the lives of people with HAE.

We are a group of compassionate HAE patients and care givers who make it our life’s work to raise awareness of hereditary angioedema (HAE), improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE.

We provide our member organizations with specially designed tools and technical assistance that promote disease education and support activities addressing the unique needs of HAE patients and their families.

HAEi is company and product neutral and enthusiastically supports drug discovery research aimed at the next generation of HAE therapies. Our great success in supporting clinical trials has resulted in a variety of approved therapeutic options. We work closely with expert physicians to continuously encourage a tailored, patient-focused approach to the use of available therapeutic options.

In addition, HAEi has partnered with GA2LEN (a non-profit organization of leading clinical and research facilities in the field of allergy and asthma) to establish the GA2LEN/HAEi Angioedema Centers of Reference and Excellence – commonly referred to as ACARE.
The ACARE centers work closely with HAEi and our member organizations to further enhance the quality and consistency of clinical care and create a robust environment for local and global HAE research.

HAEi’s organizational structure and staffing reflect our global footprint. In addition to our advocacy, operations, and technical teams, we have a team of highly talented and accomplished Regional Patient Advocates (RPA) who possess great familiarity with the region of the world that they serve. The RPAs – who work closely with leadership – form HAEi’s operational backbone and are led by our Director, RPA Progam. These proven advocacy leaders are the “on-the-ground forces” to implement HAEi’s programs, activities, and services.

Welcome to the HAE International family

HAE International is the global umbrella for member organizations around the world. For the global HAE awareness day hae day :-) we use the theme “many faces, one family”. And we truly consider ourselves as one big global family.

Every day we have HAE friends from all over the world joining the HAE International family. They want to make sure that they are constantly updated on everything that is relevant to hereditary angioedema.

The HAE International team is proud to be part of the HAE International family – and we do constantly strive to improve the situation for HAE friends all over the world.

If there currently is no patient organization or group in your country – please do not hesitate to contact us. Maybe forming a patient group would be something for you. We will help you and back you all the way.

Stay Tuned

Be the first to know about HAE news, treatments, events and related topics

The HAE International Story

Often times, persistence can overcome great failure and lead to a significant breakthrough. For almost two decades, experts have unanimously agreed that C1 inhibitor concentrate is an effective and reliable treatment for HAE attacks. Indeed, it was the failure of a poorly designed C1 inhibitor concentrate clinical trial that provided the impetus for the HAE scientific and patient communities to explore ways to open better lines of communication regarding future trial designs.

Alarmed at the potential consequences of the inadequate methodology chosen for the failed trial, renowned HAE researcher Professor Marco Cicardi decided to call a short meeting of HAE experts and patient representatives to coincide with the International Complement Congress held in Palermo, Italy in September 2002. During this meeting, patients and physicians recognized the need for a formal alliance that would facilitate worldwide information sharing and coordination of HAE research and other activities; and the idea for HAE International was born.

A group of HAE patient advocates took up the challenge of establishing a legally recognized international patient organization that would include a prestigious medical advisory panel. By the time the C1 Inhibitor Deficiency Workshop was held in Budapest, Hungary in May 2003, there were proposals on the table of how to do this, and a final charter and mission statement were signed in a meeting held in Milan, Italy in October 2003. Professor Cicardi and his group in Milan provided support, encouragement, and technical assistance throughout the whole process.

It took another year to overcome a series of bureaucratic obstacles, but the organization was finally registered in November 2004. Today, HAE International is registered as a non-profit corporation in Virginia, United States of America.

“At HAEi we spend every day striving to find new ways to meet the needs of patients with HAE from all over the world!”

Henrik Balle Boysen, Executive Vice President & Chief Operating Officer, HAEi

HAE related topics that might interest you

Global Perspectives

Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community

HAEi Advocacy Academy

Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate

HAEi Connect Member database

Free, secure online membership database and communications platform for HAEi’s member organizations

HAE Companion app

Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians

Stay tuned – sign up for our newsletter


HAEi hosted websites

Hosting of your national website or help for you to create a new website – naturally all in your native language

HAE TrackR app

Easy-to-use electronic diary of HAE treatments (preventative and on-demand), HAE attacks, and the impact HAE has on life