Who is HAEi2020-07-22T14:32:23+02:00


HAE International (HAEi) is the global umbrella organization for the world’s hereditary angioedema (HAE) patient groups.

HAE International (HAEi) is a global non-profit network of patient associations dedicated to raising awareness of hereditary angioedema (HAE) around the world.

With our decentralized approach through our Regional Patient Advocates (RPA), 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.

We actively engage in a wide variety of global grassroot activities that promote disease education and awareness. We provide tools and services enabling our member organizations to address the unique needs of HAE patients and their families.

Our great success in supporting clinical trials and research has resulted in a variety of approved therapeutic options. We work closely with expert physicians to continuously upgrade the patient quality of life through improving diagnosis and knowledge of the disease, and encourage a tailored, patient-focused use of available therapeutic options.

To further enhance the quality in management of angioedema globally, HAEi has, in cooperation with GA2LEN (a non-profit organization of leading clinical and research facilities in the field of allergy and asthma), established GA2LEN/HAEi Angioedema Centers of Reference and Excellence – or in short ACARE.

HAEi is product and company neutral and contributes to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.

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.

Get in touch with your HAE International team!

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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 Access Program

Helping to change the lives of patients with hereditary angioedema (HAE) with a medication access program

Global Perspectives

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

HAEi Connect Member database

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

Regional Patient Advocates

Constantly strive to improve the situation for HAE friends all over the world – no matter how they are organized

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HAE Global Conference 2018

This 4th HAE conference was record breaking: A total of 736 patients and care givers participated from no less than 57 countries

HAEi hosted websites

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