From Rosa María Pérez González, HAE Cuba

Hello, greetings from Cuba to the entire HAE Community worldwide.

It is always a pleasure and timely opportunity to express ourselves in the editions of this Magazine.

The year 2025 started with great momentum in our nascent association, so much so that many of us who are part of it and are located in different provinces of the country have managed to join and interact using social media through a WhatsApp group. We are 23 members so far, including patients, caregivers, and physicians, through which we monitor crises, show solidarity and support, and, most importantly, empathize with one another. Most importantly, we know we are not alone.

Our country, unfortunately, continues to lack modern therapies of choice for the treatment of crises, much less for prevention, and this negatively impacts the quality of life of each and every one of us. Currently, the therapeutic arsenal we have access to, albeit with restrictions, consists of danazol, transexamic acid, and fresh frozen plasma for the most severe attacks, so we experience the symptoms more acutely, and the stress it generates is very high.

For this reason, and given the need even to access diagnosis for a group of families with clinical symptoms of the disease, we are committed to making ourselves visible to Cuban Public Health authorities, who, despite facing significant financial limitations, are unaware of the risks posed by this disease, nor are they prepared at the different levels of health care to address it.

Likewise, we have begun a process of interaction with medical specialists and, through them, with the Cuban Society of Immunology to achieve collaborative work with patients and thereby activate care mechanisms and resource allocation to ensure the availability of specific therapies in the country. On May 16, we will celebrate International HAE Day as part of the international patient community, using this day to raise greater awareness about this rare disease in our country.