From Rosa María Pérez González, HAE Cuba

A Community in Progress Amidst Deep Challenges
Greetings from Cuba. We send our warm regards from our patient group, which is slowly building a national community. Today, we join you — patients, families, doctors, and advocates around the world — in solidarity and hope. We are united by our shared experience with HAE.

We face tough challenges, including limited access to both diagnostics and modern treatments. But we find strength in mutual support and in the backing of HAEi, which welcomed us as a member country in 2024. From different provinces and through our virtual groups, we share stories, push for visibility, and work toward a better life.

This year, we made a major step for our patients: a new pediatric care clinic for suspected HAE cases was launched at the Institute of Hematology and Immunology. This specialized service for children marks a big win for early diagnosis and national HAE care. Now, young patients and their families have a space dedicated to their care and monitoring, with professional support from early childhood.

However, amid Cuba’s severe economic and social crisis, we’ve made no progress in expanding diagnostic tools for HAE. We also don’t have access to specific treatments like purified C1-INH or icatibant, which are used in other nearby countries. At the moment, we only have extremely limited access to danazol, tranexamic acid, and fresh frozen plasma — and even these are not consistently available for all who need them.

Despite these shortages, we continue working together to secure dignified care and the support all patients deserve.