From Jesús González, Costa Rica

First Step Toward a National HAE Patient Organization
Over the years in Costa Rica, we’ve faced many challenges in creating an organization that represents and defends the rights of people living with HAE. Although rare, this condition requires specialized care and much more visibility within the healthcare system.

After many efforts, conversations, and collaborative work between patients and HAEi’s Regional Patient Advocate in our region, Javier Santana, we are proud to announce that we’ve finally taken the first step toward the formal creation of a patient organization. While it’s just the beginning, it’s a meaningful milestone that allows us to start building a strong foundation for better representation and advocacy.

This isn’t just a symbolic achievement — it’s a strategic one. It gives us a stronger voice to be heard by health authorities, especially the Costa Rican Social Security Fund (CCSS). Our main goal is to work with institutions to improve the quality of life for people with HAE in Costa Rica, ensuring access to proper treatments, timely diagnoses, and comprehensive support.

We invite anyone who wants to collaborate or share ideas to do so freely. Every contribution matters and will be welcomed — this project is built by all of us, with the well-being of patients as our shared goal.