News from Central America and Caribbean

From Regional Patient Advocate Javier Santana

Since the start of the year, my work has focused on building networks, sharing resources, and increasing skills and capacity for the countries in my region.

First, I conducted initial group meetings with Member Organizations (MOs) in Costa Rica, Panama, Guatemala, and the Dominican Republic, and held one-on-one sessions with MO leaders from El Salvador and Cuba. I supported the development of their 2026 short- and long-term plans, prioritizing strengthening the awareness campaign, identifying new physicians, engaging government stakeholders, and expanding media outreach. We established ongoing follow-ups through monthly virtual meetings to track progress.

I met with pharmaceutical representatives across the region to assess progress in the registration of new HAE therapies, particularly for Puerto Rico, Dominican Republic, Costa Rica, and Panama. I also joined patients in Puerto Rico at a pharmaceutical conference, where they introduced new HAE medications.

Physician education and awareness of HAE are fundamental to good patient care. Across my region, we undertook a variety of activities to help deepen connections and increase healthcare professionals’ knowledge:

• In Cuba, the MO lead and I conducted video meetings with new physicians to exchange knowledge and address key topics related to diagnosis, treatment, HAEi GAP Program, and patient management.
• I actively worked to expand the regional medical network by contacting new physicians in Jamaica, Honduras, and Guatemala, educating them about HAE. This work helped support the development of an HAE medical network in Guatemala, which will hopefully be ready to assist the MO in the future.
• Assisting HAE Costa Rica with a local survey assessing the current status of patients in the country.
• Communication with physicians in Panama regarding meetings held with the Ministry of Health on HAE-related matters.
• Engaged with doctors from Trinidad and Tobago, and serving as a regional connector to facilitate knowledge exchange and future collaboration with specialists across Latin America.

Part of my ongoing work is supporting MOs with operational matters related to their group, including guidance on HAEi tools and resources such as HAEi Focal Point and HAEi Connect, official registration, developing strategies to identify more patients in their country, connecting with new medical specialists, and liaising with government representatives responsible for approving new treatments or developing rare disease laws. To help strengthen awareness and outreach efforts, I shared HAEi-designed social media graphics with MOs and guided the groups in preparation for their hae day :-) events.

We continued our progress towards better organization of patient groups and greater efforts to improve the quality of life of patients with HAE across the region.