27-28 April 2019, I organized a meeting for the leaders of the national HAE patients’ associations in South America and Mexico. The gathering took place in Bogota, Colombia and the represented countries were Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Paraguay, Peru, and Venezuela.
In preparation for the meeting, the leaders of the member associations shared information on the number of registered patients, associated physicians, medicines available and other important information on the situation of each country regarding support to the patient with HAE. The country representatives reported that there are over 2,600 HAE patients registered in the associations, while more than 600 doctors are linked to the associations.
During the meeting, HAE International tools were presented to assist national associations such as HAEi Connect, emergency card, and hosting of websites. On the second working day, each representative worked on the needs of their countries and built a work plan. The aim was for the associations to develop and be able to respond in an increasingly effective way to the needs of HAE patients from their countries.
HAE International was represented by President & Chief Executive Officer Anthony J. Castaldo, Executive Vice President & Chief Operating Officer Henrik Balle Boysen, Chief Regional Patient Advocate Fiona Wardman and myself.