News from Central America and Caribbean
From Regional Patient Advocate Javier Santana
The past months have been busy with a variety of different activities to support the Member Organizations (MOs) in my region. First, I start with a historic milestone for Panama. The Government officially announced the country’s new HAE treatment guidelines, marking a crucial step toward equitable access to effective therapies. As HAEi’s RPA for Panama, I was honored to support the patient organization and doctors through meetings, ministry visits, and more over many years, culminating in this launch. You can read more about this in the Panama country update in the ‘News from MOs‘ section of the magazine.
In Costa Rica, the patient group has a new board, and I’ve been able to advise on fundraising activities, the official registration of their association in the country, and efforts to identify and engage new members. We worked together to prepare the group for a specific meeting with the National Organization for Rare Diseases (and other patient groups), where discussions centered on the newly approved rare disease law and the necessary steps for its effective implementation.
Supporting MOs with meetings and building networks is a key part of the RPA role:
- In the Dominican Republic, I co-ordinated a virtual meeting with a new physician, which resulted in commitments to collaborate with the patient group to support HAE advocacy efforts, connect the group with specialists in allergy and immunology to discuss HAE, and initiate the process for introducing treatments into the country.
- In Guatemala, Dr. Emilia Morales (an HAE patient) connected me with newly diagnosed patients. We held a meeting where I gave an orientation on HAEi’s work and provided Spanish-language materials, including HAEi’s guide ‘Understanding HAE.’
- And in Trinidad & Tobago, I’ve connected with new patients and the new doctor to develop a work plan to raise awareness of HAE and identify treatment alternatives for patients. They’ve also launched their HAEi-hosted website – check it out here.
Finally, across my Central America and Caribbean region, I’ve been promoting HAEi LEAP 2026 and the 2026 Global Angioedema Leadership Conference, and hope to encourage participation from our countries. And the Spanish-language digital books—‘Women with HAE,’ ‘Understanding HAE,’ and children’s books from The Brady Club — were distributed to promote education and awareness among patients and families throughout Latin America and the Caribbean.