HAEi is the international umbrella organization for the world’s Hereditary Angioedema (HAE) patient groups.

Our organization is a global non-profit network of patient associations and we are dedicated to raising awareness of C1-inhibitor deficiencies around the world.

We strive to improve time to diagnosis and facilitate access to and reimbursement of life saving HAE therapies, which will enable lifelong health for all patients – no matter where they live.

Prevalence of HAE is still unknown. However, we expect the global prevalence of HAE to be approximately 1 in 30,000, which means that around a quarter million people worldwide suffer from this rare and potentially life threatening deficiency.

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Welcome to the HAEi family

HAEi 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 HAEi family. They want to make sure that they are constantly updated on everything that is relevant to hereditary angioedema.

The HAEi team is proud to be part of the HAEi 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.

Get in touch with your HAEi team!

The HAEi 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 HAEi 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 France in November 2004. Since 2014 HAEi has been registered as a non-profit/charitable organization in Switzerland.

“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 Director, HAEi