First of all: We are moving towards adding Bolivia to the HAEi world map as Dr. Ariel Ramiréz has been registered as an HAE knowledgeable physician. You can find his contact information on haei.org. Furthermore, I am in contact with a woman who has both a brother, a sister and a mother with HAE in Bolivia. Hopefully, they will be interested in setting up a patient group.
The big thing during the last few months has been the first Latin American HAE workshop. We made videos in Spanish and Portuguese or with subtitles in Spanish and Portuguese for the HAE community in Latin America so that it could be a genuinely inclusive meeting also for those not speaking English. For the workshop – held in a virtual format – we had engagement and participation of many member organizations and physicians from the region. You can find an article about the workshop later on in this issue of Global Perspectives.
For the first time, member organizations in South America and Mexico came together to celebrate hae day :-) 2021. We had a preparation meeting on 12 May – and on 15 May, we had the event itself. With the member organizations in Argentina, Brazil, Chile, Colombia, Mexico, Paraguay, Peru, Uruguay, and Venezuela joining in, we had more than 50 participants for a two-hour meeting. During the event, there were activities such as videos from patients and videos from doctors – and the participants split into eleven breakout rooms for group discussions. For this meeting, we developed a logo, which I am now using for the Instagram account.
Also, I have been working on collecting replies from physicians who are part of the Regional Medical Advisory Panel for my region. Furthermore, I have provided the Chief Regional Patient Advocate with information for CSL Behring to have Berinert in Latin America and Mexico.
As for the rollout of HAEi Connect, it will be coming to both Peru and Colombia soon.