News from Central America and Caribbean

From Regional Patient Advocate Javier Santana

Following the 2024 HAEi Regional Conference Americas held in Panama, the motivation of HAE MOs in the region was high, and we hit the ground running in 2025.

Since the start of the year, patient group leaders have set new goals in their respective countries to raise awareness about HAE. I have supported them with advice on approaching the media, managing meetings with Government officials, and making the most of HAEi tools and resources. As a result, the patient groups plan activities to increase awareness and collaborations with healthcare professional groups, organize education and support sessions for patients and families, plan larger HAE meetings, and use the media to raise HAE awareness.

As part of extensive work from HAE Panama and Dr. Olga Melcina Barrera with the recently elected government and the Ministry of Health, I met with the Office of the Director of Rare Diseases of the Government in February 2025. As a result of everyone’s efforts, the officials confirmed: Panama now has generic icatibant registered to treat attacks, there will be training of more hospital centers about HAE; an official government treatment guide for HAE will be developed, and an official document will be created to help patients avoid problems when seeking HAE services in hospitals.

In the Dominican Republic, last year’s official registration means the group’s leaders have the right to visit healthcare professionals and specialists to discuss HAE. I have supported the group with guidance on how to do this, and since the start of the year, the group’s leaders have contacted physicians in the country to inform them about HAE and to help identify more patients for their group.

The pharmaceutical company CSL Behring recently held a facility event in Puerto Rico for physicians and healthcare providers. I participated in the event as the HAEi RPA for the region. This allowed me to speak with company representatives about their medication plans for HAE in Puerto Rico.

The importance of HAEi’s presence in the region was reinforced early in 2025. A newly diagnosed HAE patient from Trinidad and Tobago contacted me. We discussed HAE and HAEi. I explained how we work, what we do around the world, and how people can get involved. I’m delighted that HAEi has a new member country and patient representative in Trinidad & Tobago. Mr. Zackery Aleong is committed to working with HAEi to improve the quality of life for HAE patients in his country. I’ll support him every step of the way with plans to raise awareness and ensure access to HAE treatments soon.