From HAE Costa Rica

Summary of achievements January – April 2026

• Consolidation of the Association’s Board of Directors.
• General Virtual Meetings with HAE patients to share future plans.
• Communications with physicians and pharmaceutical companies regarding the status of medications.
• Meetings with Costa Rican rare disease associations to receive more support from local organizations and discuss the new changes to the rare disease law of Costa Rica.
• Monthly meetings with HAEi RPA Javier Santana to review strategies and work plans in our country.
• Attendance at the 2026 Global Angioedema Leadership Conference in Madrid in March 2026.
• A survey was developed to identify active patients in the country, including those with laboratory-confirmed studies, those receiving medical care, and those using medications.

The 2026 Global Angioedema Leadership Conference

As a patient group in Costa Rica, we found the 2026 Global Angioedema Leadership Conference held in Madrid, Spain, to be an important event, as we were able to learn about the global reality of the disease, including advances in research and new treatments.

We were delighted to see so many countries gathered around such an important topic as HAE, not only to see that we are not alone as associations, but also that there is an organization so committed to our families and us. We were also able to gain perspective on the realities of associations in other countries and compare the work done in our country with the progress we still need to make. Establishing connections with associations from other countries to share experiences and information was crucial for the professional development of each participant.

It was an extremely enriching session, with impeccable clinical updates and practical tools that make a real difference in our daily work and that we can implement to improve our work in Costa Rica. We left the conference with fresh ideas and a great deal of motivation to apply what we learned with our group. Great work by the HAEi organization!

Future plans of AEH Costa Rica 2026

• Ensure that the medications Icatibant and Berinert are distributed to all hospitals nationwide, as currently only two hospitals have them.
• Explore the possibility of more modern medications for treating HAE being approved in the country.
• Finalize the government registration process for the HAE Costa Rica Association.
• Raise awareness through national media and external events about HAE, its symptoms, and similarities to other diseases, thereby identifying more patients in the country and ensuring more physicians receive training on HAE.

hae day :-) 2026

A walk will be held in La Sabana Metropolitan Park under the slogan “Steps of Hope: Walking for Hereditary Angioedema,” where information about the disease will be provided to citizens, and information booths will be set up.