My greetings from Cuba with the desire to continue being an active part of the great HAEi family.
2024 has been a fruitful year for HAE Cuba. We are a young organization that wants to acquire work experience and continue to be involved in the International patient Community.
- Our organization’s first participation in the Regional Conference of the Americas, represented by three patients and a doctor, marked an important turning point in our desire to establish ourselves as a country under the HAEi umbrella.
- Arriving in Copenhagen, represented by a patient and two doctors, and participating in both world forums was an unforgettable experience that gave us great relationships and teachings.
- We created our WhatsApp group for patients. We started updating the national registry with the support of the Institute of Hematology and Immunology of the Ministry of Public Health of Cuba (the medical center responsible for the disease in the country), which has allowed us to realize that the Cuban HAE family is larger and is dispersed throughout the island, that we need to be more united to face the challenges that the disease imposes on us and to promote solidarity among ourselves. This has undoubtedly been the fundamental achievement of our member organization this year.
We are always grateful to our regional advocate, Javier Santana, and other member organizations from other countries with which we maintain excellent communication.