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.