Alarmed at the potential consequences of the inadequate methodology chosen for a poorly designed C1 inhibitor concentrate clinical trial, renowned HAE researcher Professor Marco Cicardi calls a meeting of HAE experts and patient representatives to coincide with the International Complement Congress held in Palermo, Italy – the idea for a global HAE organization is born.

A group of HAE patient advocates begin establishing an international patient organization.

HAEi – the international umbrella organization for HAE patients is registered and legally recognized. The seven founding members are the national HAE organizations of Argentina, France, Italy, Hungary, Spain, the United Kingdom, and the USA.

The founding members hold many fruitful meetings, but the group realizes that to drive HAE advocacy forward and to grow, HAEi needs someone to serve as a dedicated, full-time Executive Director. In 2009, Henrik Balle Boysen was appointed to that role, responsible for planning and executing the organization’s strategic and operational direction.

HAEi published its first State of Management of HAE in Europe report – available in 10 European languages.

• The first HAE Global Conference takes place in Copenhagen, Denmark, attended by 350 people from all over the world.
• The first HAEi newsletter is published, the forerunner of Global Perspectives magazine.
• The first hae day :-) takes place, with activities and events spreading smiles across the globe.

HAEi reaches 40 member countries.

Approximately 450 people gather for the second HAE Global Conference, held in Washington DC, USA.

HAEi grows to 51 member countries. HAEi publishes two State of Management of HAE reports; the first report to cover Latin America and an update to the 2011 Europe report.

• HAEi grows to 55 member countries.
• 525 participants gather for the third HAE Global Conference in Madrid, Spain, including a special Youngsters’ Track for the first time.
• HAEi appoints the first Regional Patient Advocates (RPA).
• The first HAE Global Walk for hae day :-) takes place.

• The first HAEi Youngsters’ Summer Camp takes place in Frankfurt, Germany.
• HAEi launches fully designed and free-hosted websites for MOs.

• HAEi grows to 69 member countries.
• The 4th HAE Global Conference, in Vienna, Austria, welcomes 735 participants.
• HAEi Connect launches to provide MOs with an easy-to-use and GDPR compliant membership database.
• The HAEi Youngsters’ Community website is launched.

• HAEi is registered as a non-profit corporation in the USA and now supports and represents 84 member countries.
• Modern HAE medication is delivered to South Africa under the HAEi Global Access Program (GAP).
• The first HAEi Youngsters’ Advocacy Workshop takes place in the USA.
• In partnership with GA²LEN, HAEi establishes Angioedema Centers of Reference and Excellence (ACARE) to create a worldwide network of accredited angioedema care centers.

• HAEi now numbers 92 member countries.
• Our RPAs establish Regional Advisory Groups.
• Due to the coronavirus pandemic, the 2020 HAEi Global Conference goes virtual, with more than 12,200 visits to the dedicated website.
• HAEi appoints a Chief Medical Advisor, and establishes Regional Medical Advisory Panels.
• HAEi introduces the HAE Companion app to help patients access and store emergency cards.
• HAEi Advocacy Academy, a free online training platform, is launched.

• HAEi grows to serve 93 countries
• We celebrate the 10th hae day :-)
• HAEi introduces HAE TrackR, an easy way for people with HAE to track their condition, attacks, and treatments.
• An HAEi supported pharmaco and socioeconomic study, conducted in the USA, is published in Allergy and Asthma Proceedings.

• The first HAEi Global Leadership Workshop (GLW) hosts just under 500 attendees in Frankfurt, Germany.
• The patient guide, Understanding HAE, is launched at the GLW.
• The first HAEi Virtual Angioedema Centers begins in Australia. Virtual Centers are designed to connect people with chronic swelling disorders (who may live in remote areas or otherwise cannot travel) to expert angioedema physicians.

• The first HAEi Regional Conference for the Asia Pacific region takes place in Bangkok, Thailand, with over 250 participants.
• The first HAEi Regional Conference for the Europe, Middle East and Africa, is held in Munich, Germany, with 650 participants.
• HAEi LEAP springs into action, offering young people with HAE or caregivers the opportunity to learn new skills, developing as individuals and advocates.
• The Women with HAE booklet is made available, providing tailored information for the unique challenges faced by women with HAE
• The HAE Heatmap survey is conducted in The Philippines, identifying pockets of potential HAE patients and leading to many new diagnoses.
• The Baseline Burden of Illness survey is run in Mexico and South Africa.