At times it can seem hard to keep track of all that has evolved in and around HAE over the years. Here is an overview – at least when it comes to the development of HAE International.
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 establishes an international patient organization.
After overcoming a series of bureaucratic obstacles, the organization is registered – the seven founding members are the national HAE organizations of Argentina, France, Italy, Hungary, Spain, the United Kingdom, and the United States of America.
In just one year, HAE International grows from 40 to 51 member countries.
Another good HAE International year with growth from 55 to 61 member countries.
HAE International is registered as a non-profit corporation in Virginia, the United States of America.
The initial shipment of modern HAE medication is delivered to South Africa under our Global Access Program (GAP) offering a regulatory compliant process that allows healthcare professionals to secure treatment for their HAE patients.
The first HAE Youngsters’ Advocacy Workshop takes place in Atlanta, Georgia, the United States of America.
We partner 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.
We kick off the HAE Heatmap Project with the primary aim to test the viability of a survey research approach to estimate the incidence of people with undiagnosed HAE visiting Health Services in countries around the world.
The growth continues from 69 to 84 member countries.
Due to coronavirus COVID-19 the 2020 HAE Global Conference in Frankfurt, Germany is transformed into a virtual conference.
Our Regional Patient Advocates establishes Regional Advisory Groups.
We establish the HAEi Regional Medical Advisory Panels in each of our regions and appoint Professor Marcus Maurer as our Chief Medical Advisor.
We publish a pharmaco and socioeconomic manuscript and Quality-of-Life tool.
We provide an update of our State of Management Report.
HAE International is now serving as the global non-profit umbrella organization for 92 national HAE member organizations.