From Andry Batista, HAE Dominican Republic
First Quarter (January-March 2026) and 2026 Work Plan
- We have held two meetings with members of the Senate Health Committee to learn about the status of a draft bill currently under consideration. This bill seeks to include the treatment of rare diseases, including HAE, in the list of high-cost medications subsidized by the State.
- We have added a specialist (an allergist) to our Board of Directors. She is a member of the Dominican Society of Allergology. We are also in contact with other specialists (dentist, anesthesiologist, pediatrician, nutritionist, emergency physician) interested in joining our team.
- We have added a graphic designer to our team. They will assist us with the design and production of materials for disseminating our content through our platform and digital networks.
- We are currently coordinating meetings and gatherings for the third week of May with authorities from the Ministry of Public Health, legislators, the Dominican Society of Allergology, and others, with the participation of Javier Santana (our HAEi RPA), to raise awareness and provide updates regarding HAE.
- Similarly, we will conduct a series of visits to various media outlets, together with our RPA Javier Santana and our new medical advisor, to increase public awareness of the disease.
- We are taking positive steps to establish the first ACARE center in the Dominican Republic. There is a strong possibility that this center will be located at the Central Hospital of the Dominican Armed Forces (in the metropolitan area of the capital). In this case, we have utilized the guidance, support, and assistance of our RPA, Javier Santana, and Dr. Linda Flor Medina, an allergist specializing in our country and a member of the Central Hospital of the Dominican Armed Forces.
- For hae day :-) on May 16th, our goal is to prepare an awareness campaign for the general population (digital media) about the existence of the disease in the Dominican Republic and the importance of consulting a specialist for diagnosis, management, and treatment.
Our opinion on the 2026 Global Angioedema Leadership Conference held in Madrid, Spain
From our perspective, it was a highly significant, well-focused conference with real impact, especially because we had the privilege of participating in an event that brought together leading patient advocates, physicians, researchers, and pharmaceutical industry representatives from over one hundred countries.
This, consequently, reveals that HAE continues to be a priority on the agenda of those who manage and lead these types of events, even though the disease still faces significant disparities between countries.
We were pleased with the event because, unlike traditional conferences, this one (organized by HAEi in conjunction with ACARE) had a hybrid approach: science, health policy, and leadership from patients and support organizations, in addition to the scientific component addressed.
But in particular, for the Dominican delegation that participated, this had a direct impact, because it raised awareness of angioedema in the country and created the possibility of influencing the national health system, so that our patients will finally have access to timely treatments in the future.
And the fact that one of our specialist physicians from one of the most important hospitals in our country was able to participate for the first time in the HAEi conference is a giant step for patients in our country, because the doctor will be able to share her experience at the conference, along with all the information and documentation presented, with other doctors in our country.
Furthermore, the conference itself served as a gateway to international cooperation and networking, providing access to specialized medical networks, new treatments, and helping to strengthen the leadership of local foundations.
Therefore, we are not exaggerating when we conclude that this conference fulfilled its strategic role of continuing to deepen our understanding of the disease and contributing to bringing encouragement and a ray of hope to patients and their families who suffer from it.