News from Central America and Caribbean

From Regional Patient Advocate Javier Santana

2025 highlights

During 2025, I supported my region’s eight Member Organizations (MOs) with strategic guidance and specialized advice on government affairs, communications, and organizational development. This close collaboration enabled the MOs to identify new patients, increase national awareness of HAE, and sustain effective relationships with medical specialists and pharmaceutical industry representatives.

Among the most notable achievements of 2025, we welcomed Trinidad and Tobago to HAEi’s global MO network and identified a new HAE specialist physician in this country.

In Panama, we saw the approval of the country’s first official treatment guidelines for patients with HAE. This accomplishment was the result of years of collaborative efforts among patient groups, medical specialists, and HAEi, culminating in the Ministry of Health’s official presentation of the guidelines for implementation across all hospitals nationwide.

Another significant milestone was in the field of rare disease laws. Costa Rica took an important step forward by including HAE in its new Rare Diseases Law. In the Dominican Republic, the Senate is also awaiting approval of newly introduced rare disease legislation that will include HAE.

These advances reflect the positive and sustained impact of the regional work carried out throughout 2025.

Hopes and goals for 2026

For 2026, my goals focus on consolidating regulatory progress and expanding access to HAE treatments. Key priorities include securing final approval of the new Rare Diseases Law in the Dominican Republic and authorizing the use of HAE-specific medications. Efforts will also focus on advancing the approval of the treatment guidelines in Costa Rica and the inclusion of additional modern therapies beyond those currently available. I will continue to actively support and collaborate with the MOs in Guatemala, Trinidad and Tobago, Cuba, and El Salvador to facilitate the approval and access to HAE-specific medications. Identifying additional patients across other countries in the region remains a central objective.

Finally, I look forward to continued collaboration with the MOs in my region to increase their visibility and the resources available to patients, and to help them and healthcare professionals identify additional people with HAE.