From Regional Patient Advocate Javier Santana
In April, a follow-up was given to the survey that HAEi designed for my region in Spanish. The survey will help gather important information on the current situation related to HAE. All group leaders from the countries of the region participated in the survey.
Chile held a virtual conference on HAE to which all the leaders of the Central American countries were invited. As HAEi Regional Patient Advocate, I had the opportunity to speak to the participating patients and doctors about the work that HAEi does internationally and how we help patient groups.
During hae day :-) several groups in my region held events in their respective countries to educate and raise awareness about HAE. Several of the patient group leaders managed to get interviews in the media talking about hae day :-) and publications in some media. Furthermore, I have been invited to write several columns for newspapers of national circulation in the countries I represent to educate about HAE and explain the specific situation for which treatments do not reach the countries.
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In May 2022, several events took place. For instance, HAE Costa Rica held a virtual meeting where new patients with HAE were invited, and I had the opportunity to talk about the work that HAEi does globally and how we help national patient groups. Also, HAE Puerto Rico held its annual conference where HAE specialist doctors talked about new treatments, research, and COVID-19 vs. HAE. As a representative of HAEi, I had the opportunity to address patients and give a presentation on advocacy and the process of getting HAE medicines to countries through governments and their departments. Dr. Marc Riedl from US HAEA Angioedema Center in California was the main speaker and special guest. The president of the association of allergists and immunologists of Puerto Rico, Dr. Anardi Agosto, and the past president, Dr. Rafael Zaragoza, were also speakers. Furthermore, pharmaceutical representatives participated in the event.
New communications have been established with contacts in the Dominican Republic regarding my visit there soon to meet with government officials, doctors, and media representatives to discuss HAE.
